For those who care for someone with Parkinson's disease
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By countrywoman On 2015.08.03 11:04
Hello everyone, I am new to the forum. I am currently the caregiver for my husband who is the person with Parkinson's. I am totally overwhelmed, sad and angry. I can't seem to move on. His biggest problem is start hesitation. I have purchased him the laser cane that is helping some. He is 69 years old and I am 57. I feel so alone and afraid.

By LOHENGR1N On 2015.08.03 12:02
Hi and welcome to the family here on the forum. You've found a great site filled with wonderful people. It's only normal to have these feelings you describe. If you have a chance sometime look up the stages or steps of grieving and keep them handy because We revisit these feeling throughout out walk with Parkinson's. We'll all try to help you with anything you have questions on. I'm sure others will pop in to say hi and welcome you soon. Again welcome to the forum. Hang in there.

By Trusting On 2015.08.03 12:13
Hi, and welcome to the forum. I remember my first time being here and wasn't sure what to expect, but I've found more help here from people with experience than I get from doctors.

There has been no topic off limits. We laugh, we cry, we scream. It just helps! Just join in and don't be afraid. We are all going through this road we have never traveled before.

Blessings to you.

By jcoff012 On 2015.08.03 12:32
Welcome. My name is Jane, I just turned 67 and my husband, Carl, is the PWP (person with Parkinson's). Sadly, his Mom died at 80, after fighting for over 22 years, so we know what is coming.

It is quite normal to be afraid. The best way to handle that fear is to talk it out...we are here, talk to your friends and family, join a support group, talk to your husband's neurologist. There are a lot of people who understand how you feel and can help.

I remember sitting and crying for several days, knowing our grown children would all have very different reactions to the news...and they did... Our oldest daughter still has not accepted what is going on and chooses to stay away...out of fear, I guess...

I cannot tell you not to be afraid, but I can tell you that with time comes acceptance...
acceptance of the may help you if you step back and try to see this from your husband's point of view. I can guarantee you that he, too,at times, is overwhelmed with loss...

I have had many discussions with my husband...he said at first, he was afraid, then sad, then had to accept that having PD was nothing he "did", so he had to accept "it is what it is" as the kids say. He also said it made him sad to know he won't be here to be the family protector, as he has been for his six brothers and sisters, me, our family and our two grandchildren...When he said that, I came to realize that this disease tears us both down, but, of course, what it does to his self worth, his physical body, and his mind is much worse than anything *I* have to face.

That said, your loss, your sadness, your problems are very real. Being a caregiver is not foe sissies. We are here because we need a safe place to gather and to vent. If you read the topics in other posts, you will see real world problems, outpourings of love for those who are suffering, and condolences for those PWP who have passed.

You also will learn that PD is different in each person. So far, my husband has been very highly functioning, but just over the weekend, he has started to show more outwardly noticeable signs...he knows it, but I have learned to let him be. When he is ready, he will talk about these changes.

Come back often. Don't be afraid to post how you feel. Ask for help with your feelings or for help with daily activities.

Good luck, and as Al always says, we are here and will give you as little or as much help as we can. Jane

By countrywoman On 2015.08.03 15:07
Thanks everyone for your kindness. I believe that Jane is trying to point out that I shouldn't feel sorry for myself and think about it from my husband's point of view. I do realize how hard it is on him. Thanks again.

By Lynnie2 On 2015.08.03 16:12
My husband has had PD for almost 8 years and was diagnosed at age 59 and now 67.
I must say it isn't easy but know you have support here among the caregivers.
We know what you are going through or will go through in the future with your husband.
My thoughts are with you and hopefully you will find some peace in knowing you aren't alone.
Parkinson's can affect each individual differently so what my husband might experience or others might experience doesn't necessarily mean your husband will have that symptom.
I can understand how you feel and might feel sorry for yourself and that is normal. You are both going through this disease and I just hope that your husband will have a positive attitude and try to help himself. Exercise or having a hobby is most important.
My husband has problems doing things now and expressing himself, so we are going to speech therapy to try and help in some way.
I hope you have a good Motion Disorder Specialist or neurologist to see during the year.
Take care and don't be afraid to ask any questions and hopefully we can help.

By countrywoman On 2015.08.03 17:51
Thanks so much...

By umajane On 2015.08.03 18:12
Welcome to this board...
We experience all kinds of feelings from sadness to frustration and loneliness..
Try to stay busy and engaged and take good care of yourself. You will need to rejuvenate from time to time.
I make sure my husband does plenty of exercise even when he doesn't want to.
I try not to nag him and let him get lots of rest and many naps during the day.
Good luck on your journey...

By Mary556 On 2015.08.03 19:11
Greetings, countrywoman. It is good that you are here in this place where many caring and knowledgeable people try their best to support one another. Sometimes I feel alone and afraid facing the challenges we face. It helps me to know that I am not the only one and hope you will find some sense of comfort and comraderie as well.

Wishing I had some words of wisdom to give you. Make sure you get enough rest for yourself. We take a nap every afternoon; I've learned to sleep whenever my PWP sleeps, if possible. We have a home health aide who comes once a week to give my mother her bath. It is a bit of respite that we find very helpful.
Music helps me to feel better. I sing to my Mom when it is time to wake up and we sing along with stretching exercises. I sing with Christmas carols or inspirational music (Angels of Fenway) when I am cleaning the house late at night. We pray a lot.
You are not alone. I hope it will help you to come back here to read and share with others who understand.

God bless all of our PWPs and caregivers.

By jcoff012 On 2015.08.04 17:17
Countrywoman, I would never tell you not to feel sorry for yourself...we all do at times. What I meant, I said poorly...

I meant for you to understand that PD *IS* hard on you and the family. That is a simple, but powerful statement. I just know that no matter what we go through, our PWP has devastating loss, too.

You will come to see by getting to know everyone here, that we all know the frustration, loss, and especially the horrific changes to our solo future, and the loss of our mutual future, as a couple. My husband and I planned so many things for our retirement, but they are not going to happen...we are learning to adjust our future and do the best we will, too.

And, these very wise caregivers are giving great advice, as usual...take care of YOU...remember, we are caregivers of necessity, not necessarily of we accept this and make it a choice is up to each person. Hugs to you and NEVER be afraid to say how you feel....Remember not to lose YOU along the way. Hugs, Jane

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