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Topic When to say what you need to say? Go to previous topic Go to next topic Go to higher level

By smith2628 On 2009.11.14 05:34
Although my dad has only had parkinson's for a year now(diagnosed a few months ago) his decline is fast. He is confused a lot. Didnt recognize his grandkids yesterday. I want to tell him so many things before his mind goes. I want to tell him what a wonderful dad hes been and how much I love him. I have so much to say but I know that will scare him. He will know that Im saying goodbye in some way. When do you say what you need to say without scaring them? Especially when they are in the begining of this disease. Im afraid Ill never get the chance to if he gets dementia.

By Emma On 2009.11.14 06:09
I understand what you're saying. I've been kind of in this same place with my husband because his dementia is getting worse and I want to be sure that we both have a chance to say what we want to or need to, and also that he has a chance to tell me what he wants for his future care. I've been surprised that it really hasn't upset him, and in some ways he seems almost relieved.

People like to know, and hear, that they are loved, I don't think it will upset your dad. He may have things he wants to say to you too. I bought an autobiography, story of my life type book at Barnes and Noble that poses questions like "what is your first memory of school" and you fill it in. I told my husband that I thought it would be something fun he could do and give to his grandkids. As we go through it it gives us a lot of opportunity to talk about things that have happened in his life as well as about our feelings. You might want to try something like that. I also just bring things up in conversation like remember when we went here and you did this, I was so proud of you, etc. One thing I've learned is that if you think something good, nice or loving about someone you need to say it. It will lift them up and you will not regret having missed your opportunity. Go slowly,test the waters, see how he reacts. With my husband it sort of opened the flood gate and he is expressing his feelings, fears and wishes to me.

Your instincts are right and you will find a way.

By Emma On 2009.11.14 06:39
Another thing - when my husband and I started having these talks I was surprised to find out that he was much more aware of his dementia and mortality than I thought and that he had wanted to talk about some things but was afraid of upsetting me. This has been a learning experience and it has made me much more open with the other people I love as well. It's also made me feel much closer to my husband and given me a better look inside his heart, which makes me more compassionate toward him in trying times. Talking to your dad will be a gift to both of you.

By annwood On 2009.11.14 11:20
You are a very wise woman, Emma. The book for the grandchildren is a fantastic idea.

As for when is the right time to tell them how much you care or explore what they want is yesterday. If you wait it may be too late. That goes for everyone because we don't know what life may bring for any of us.

I believe that PD pts are much more aware of what is happening to them than we think. It is probably a relief to be able to verbalize some of it rather than keeping it inside. Many many believe that they are sparing the caregiver grief. It is so much better when you can be open and honest. This is one gift we can give them.

Even if the pt has dementia they respond to love. They also have those mysterios days when they seem lucid - cherish those and let them know that you care.


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