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Topic watchout some thoughts from a medicated mind Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2013.07.28 00:12
Caregivers/Partners, Please don't write off counseling. Even if your PWP has dementia, or maybe especially if they have it. I have often mentioned stages of the mourning process, and the sense of loss is one.

This disease with it's hideous progression seemingly keeps Us revisiting these stages over and over again as it takes, then takes more! The loss is real, it is personal and it is so, so saddening. When it gets Us down we have to come to terms with the loss. Let's face it, it's not going to get better. So in this case if one goes to counseling to learn ways to cope with and handle this re-occurring mourning all the better for you and your well being. Learning to deal with the grief day to day can only help. For those suffering from dementia as has been said they wouldn't remember the counseling anyway. Well no they wouldn't because they don't remember the, or recognize there is a problem. But it may help you and you caregivers/partners are the ones facing this 24/7. So if you're finding yourself overwhelmed more and more take some advice from this Parky and talk to your clergy or see if you can find a grief counselor, explain why couples therapy might not work or won't work Get some tools to help yourself. Otherwise We will become bitter, resentful and our love will be slowly replaced by hate. Then We are all doomed, when our love has left and that spot is filled with other emotions we are mere shells of what we were. Because really isn't that why we keep our "loved ones" home for as long as we can? Not because of a promise of for better or worse, not because they gave birth to Us or Fathered Us. Not because it's cheaper or we can't afford to do otherwise it is because You love them period.

It's normal to feel you're too young to have all this responsibility or too old to have it. It's normal to feel it's not fair! These feelings need to come out to be recognized but they need to also be dealt with and not let fester. A self help book or counselor? Whatever helps to get you back to the main reason you're still here in this love. You love them. Maybe they're not the same person they were but parts of them are and those parts are loved by you. I'm done preaching for now, take care, best of luck and hang in there and please remember We Parkies love you too.

By lilflower On 2013.07.28 10:37
God Bless you for your courage. Yes it can be frustrating and we are trying to keep communicating and telling each other what and how we are feeling. I am hoping if the day comes my hubby will except outside help. He tends to shutdown when others are around.

By carman96 On 2013.07.28 13:28
No doubt I could benefit from counseling but it's. too much right now. I'm just trying to find time to go to exercise class because I always feel better afterwards.
With all the doctors dentists physical therapist etc appointments Seems like we barely have a day without one.

By Rempt2 On 2013.07.28 16:06
I recently signed up with a group called CUSA. It is an email support group (or postal mail for people who don't use the internet). Most people in the group have progressive, chronic disease but they recently opened the group to caregivers as well. The first person who responded to me has Scleroderma which is progressing. She said she had depression after her diagnosis (she is now homebound) and said she thought about her condition all the time but she realized "I wasn't going to die soon, and I began to get on with my new life as best as I could live it." She has been very involved in an internet ministry called the World Apostolate of Fatima. CUSA is a Catholic ministry but it is open to anyone with a chronic, progressive disease and their caregivers. More information can be found on the website or from the administrator of the group (Father Jagdfeld at

By Mary556 On 2013.07.30 07:49
This is such a wonderful group. I found you in a random search a couple weeks ago and keep coming back to lurk in your conversations. My Mom is our loved one with PD. She is a strong person. Lately she is experiencing attacks of anxiety and depression every day, crying spells that seem to come out of nowhere. She does not understand them or want them. Dr gave Mom an anti-depressant RX, but it resulted in dangerously-low blood pressure and had to be discontinued. Your suggestions here are very helpful, an answer to prayers for my mother. We have grief counselors at our parish, but had not thought to call them. We did not know about CUSA either. My Mom is happy for these great ideas!

Some day I will be back to ask a more specific question, but for now just want to say *Thank You* for being here. You all are so kind and supportive. It is very encouraging to know there is a haven, a place to find some answers.

Peace be with you.


By LOHENGR1N On 2013.07.30 15:36
Mary556, Hi and welcome to the forum! Glad you found Us and glad we have been of some help. You've got a great bunch of caring people here who'll try to help in any way we can. We look forward to your questions and suggestions in the future. Take care, best of luck and hang in there

By parkinit On 2013.07.31 08:39
Al -

I have not given up on counseling. The VA offers us free counselors, so we have the "couples counselor," but I also have my own female counselor. I will start visiting with her more to have someone to talk to about this disease. Especially when family is not open to discussing this disease or you simply don't want to burden them, you need someone to talk to. Some use this board and that is okay, too, but sometimes we do need more than that.

Mary - Glad you find this board helpful. It has certainly held my hand while I've traversed this slippery, mountainous path. Welcome!

By dkleinert On 2013.08.04 12:06
Mary, welcome! This Forum has literally saved my life. I know I would not have made it through these 8 years without it. I was so lost, scared and fearlful when I found this Forum. So many loving folks here. There is no other place to go - inside or outside the internet - where you will find so many with so much experience that they so freely share with all of us. And we have Lohengrin - our amazing PWP - who continues to be able to show us how it feels from "their" side of this disease. Lurk all you want, and jump in anytime. We love you and will be there for you, no matter how long or what you need.

By Mary556 On 2013.08.04 20:36
Thank you for your kind welcomes. I've been looking for ways to take better care of my Mom and to comfort her along the way. Sometimes we have felt confused and helpless what to do next. It is a great blessing to find you all now. I am learning a lot here already. There is much love and wisdom in your words. I'm very grateful for your kind hearts, your goodness and understanding.

Yes, it did not take long to notice that your Lohengrin is one amazing person!

By moonswife On 2013.08.05 09:28
I am so glad you found your way here. I have learned more on this forum, than all the other reading, and doctors I have questioned.
Over and over I see the same issues arise, and finally someone posts, have the Rx been checked lately. Is the PWP eating no protein before specific drugs are consumed? Can anything else be disrupting the drugs working, like dehydration?
Come back often, and always trust Al's advise. He is very wise.

By Mary556 On 2013.08.07 08:22
thank you, moonswife... we didn't know about protein interference! will make some adjustments. I am learning so much from you all.

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