Advising caregive of "new" symptoms

[FMundo]

I am in stage one PD moving across to stage 2. Most of my new symptoms are not visible to the outside world... and though they are minor, they lead to depressed feelings and discouragement. I have always "shared" things with my wife, however I am beginning to question the wisdom of doing this.... because her response when I tell of a "new" symptom always seems .... so inadequate. But I ask myself the question, "Well Frank, what would you say... if you were her? What would be a good response?" And I can't answer the question. Usually she says nothing.... or changes the subject. She could say "How interesting..." or "Boy you must be discouraged about that"... or... "Well, hang in there buddy."

How do others report symptoms in a gentle way, and what kind of answers do you hear that are most positive? Is there a standard reply that is positive and uplifting or that allows you to continue to share the burden and not keep this stuff bottled up. Is "not sharing" a viable strategy?

Basically if I stop talking to my wife about these things, I will feel so alone . . .

[Hidden]

Standard reply: my wife says "We will take it one day at a time".

If only I could understand what that future holds. I have hope that I "fall" into that large percentage of PwP that live out a long life with symptoms that are not severe. At present I need no meds.

[lmbanni]

Hello Frank, I am answering this for you only by typing my husband's answers. He no longer can type. He feels you should keep talking to your wife. He says, she is in this as much as you are . I went to see my nuro yesterday and saw how many couples are in there. It is either the wife or husband, of course who is sick, and it didn't matter who had it, they both carry this problem. They both are doing the best they can. It affects them both. Hang in there, there is really nothing else I can say because nothing else makes sense of this whole thing!! This is a horrible disease!!! My wife takes care of me no matter what! She is my.... rock!! She is my everything!!! Lets just be thankful we have good spouses!!!

Frank, this is my answer to you. I am Leo's wife, Mary. Your question touched me when I read it and had to share it with Leo. I wanted his answer of us just as much as you want your wife to talk to you! I feel for you Sir. It IS a very hard disease and as my husband Leo tells you, it is affecting you both. Your wife my be afraid to answer you in a negative way and may be afraid to depress you more. You say you talk about everything then I think you need to tell her how you feel about her answers. You need her help and encouragement and you need to know if she is scared and you need to know she will be there for you when you are scared. It only will get harder and more depressing holding all that in. That will not be good for you or her.

Talk, talk, talk!! You both need to be honest with your feelings.

Hope this helps. God Bless you both!

Mary and Leo

[wifeofparky]

This is a toughie. Ken would share his symptoms with me all the time. I am a nurse and took a very active role in his PD care and looking for solutions. We are all different. She may be afraid of what the future holds for both of you. I can only offer what worked for us. I researched and read all I could to understand what the future could hold. I went with him to all his appointments, took notes and asked questions. Fear can be paralyzing. Encourage your wife to speak about her feelings, fears, etc. Let her know you are scared also and that together you can get through it. Take each day as it comes and ALWAYS let her know you love her because one day you may say things you really don't mean but blurt out in frustration.

If you haven't already, seek out a support group. She may be able to speak to more freely about her fears to others and get some advice that may help her to deal better with the unknown.

God bless you my friend.

[bachcla]

I was a caregiver for ten years, and my wife tried to mask her new symptoms, not only from me but from the doctors. Pride, I guess. See my post today about a free Kindle download for my memoir, Please Stop, which discusses our experiences. Just go to Amazon.com and enter Claude Bachand. I wish you and your wife the very best.

[cjsg]

My hubby doesn't talk to me about how he is doing, or what he is feeling. I usually say ,"you are having trouble walking today.", or" trouble sleeping last night"? He doesn't want our life to become all about him, and PD. If he said something to me, I am not sure how I would reply. I am a fix it type, and would probably come back with, " do we need to call the doctor", or should we slip in some extra med to day to see how that helps". or lets do an extra 20 minutes of chair exercises to see if that works. My last one would be let's go for a drive and get away for a while.

[mj2dg]

I'm still keeping this monster at bay for the most part with exercise, supplements, medication and good eating but this resonated with me. I don't talk to my husband about my symptoms very much because he gives me a look or something that makes me sense he doesn't want me to talk about it. I don't want to be seen as a complainer since I have a sister that's the queen of all complainers and none of us ever want to be alone with her. I also don't want to add anymore stress to my husband since he has such a stressful job and I worry about his health too. I try to hold in anything unless it's positive and then I just vent to my support groups. I know this is probably not a viable long term solution but it's mostly working for us for now.

I agree with everyone else who recommended support groups, they are a tremendous help. I hope you and your wife find a way that works for both of you.

[Hidden]

Maybe you should consider that she is worried about the future and her ability to be a care giver and is a bit overwhelmed. Maybe take some load off her, go to a PD support group meeting alone and feel sorry for yourself with them. Then go home and try to make her feel like the world is not getting smaller and closing in on her. How often do you go out to concerts and dinner with friends so she can have a normal life? Stop feeling sorry for yourself, buck up, and start to make her happy. Look at the subject " Divorce" in this forum and start to work hard at avoiding it. PD is just as tough on the caregiver as the patient, so go see how she is and do not mention PD again to her for awhile. Did not expect that one did you? Sorry but you may be in trouble if you do not try harder, Ok so you feel alone, big deal. can you actually do it alone? You are just starting this PD journey and you have already started giving in to it. Unacceptable, You are in a form of denial, self pity, shake it off and start planning with your wife how to have a happy life. Boy I will take heat for this one.