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Topic how do you beat the anxious feeling? Go to previous topic Go to next topic Go to higher level

By oshroshr On 2013.01.26 23:10
Lately I have been feeling even more sympathy and sorrow for my husband as he gets worse in the disease. I read the posts especially from those of you who have pd and it helps. But I feel so sad and also afraid of the unknown. I know the disease is getting worse, a lot worse lately. And episodes of trauma are more intense than before. I know all of this. But I am getting more afraid. So I come here and it helps and I have started to post again.
Is there a way to beat the anxious feeling or is it here for the duration? I am even getting fearful that as I get older I wont be able to help enough. There was a 2 week period of falling spells and the firemen emts asked me what I was planning to do long term out of kindness and I said just press on. They came 6 times to help him up but that period seems to have abated right now.
Other people see things through clearer lenses I think and I am wondering if I am thinking clearly about all of this. How long can I do what I do? I am supporting all of the things that you other care givers and patients are handling. If things dont get worse I will be OK. But I am not strong enough to lift him etc.
Sorry I am rambling but just thoughts would be appreciated. It has been almost 9 years and I have been retired since 09. Thanks for listening.

By dkleinert On 2013.01.27 00:25
I have waves of anxiety for the same reasons. Coming to this forum DOES help. You can search for any topic here, and find help, opinions from experienced caregivers and patients. Knowledge is power as far as I am concerned. I read everything I can. Early on, 8 years ago when I started reading here, there were people who posted who no longer post because their loved one passed away. Their candid, emotional posts gave me a true picture of what is to come for us. That was fearful and helpful at the same time. Because this disease progresses at totally different rates for every person, you cannot know the duration. However, read all you can. Make as many provisions for help and assistance as you can. Look into all that your County or State can provide to you. Hospice can help - talk with them now to see at what point you would ask your physican to order their care....check into your local Council on Aging or whatever your County or State calls it - they can come to the house and do an assessment and tell you what they have to offer. Depending on your finances, there are MANY services that you can hire to come to your house to help you. Our county has services that are free or can be paid on a sliding scale depending on your income situation. Check in to all of it.

The anxiety, I feel anyway, come from the unknown. Not knowing how you will cope and take care of the one you love. Find out. Do it now. Create a plan on paper or in your head so you don't feel so vulnerable. A WISE author named Andy Andrews wrote a book called The Final Summit, (and the first book The Travelers Gift) and in it he teaches you to overcome fear by DOING SOMETHING. One of the questions he asks is "Even though you don't know what to do, if you DID know what to do, what would you do? The answer is - do SOMETHING. Fear is really a vapor. As Andy says, "Fear is the creative misuse of the creative mind God gave us."

Also, do you know you are going thru the grieving process? I learned that here. ALL of the stages of grief. You will experience them before your loved one passes away. You are grieving for the life you envisioned for your husband and for you, all the experiences you thought you would have and won't. So accept that, and be gentle with yourself. You are in pain also, watching your husband deteriorate and slip away to be someone you don't recognize anymore. No one can know what you know and the depth of the pain and sorrow you feel, except those of us who experience it also. We all feel it every day to some degree when we see their condition changing - becoming worse.

I totally understand your anxiety, and I used to live in that state all the time - UNTIL I read The Final Summit. Now, when I feel myself becoming anxious, I know I need to DO SOMETHING, whether it is go online and find an answer, come here to the Forum or call someone or pray or whatever will eliminate or diminish the anxiety/fear. I pray you find something you can do by replacing the anxiety with action.....you will feel more in control and then the fear and anxiety will receed. MANY large HUG to you!

By oshroshr On 2013.01.27 22:17
Thank you for such a kind and in depth response to me. I will do what you say. My husbands mother lieved with us till last November for 18 years and in the end I was doing both and had hospice for her.
So he is not ready for the outside help and I think I have to wait until there is not choice. I think we started this PD journey about the same year and I really do not have any friends left nor does he. So your friendly comment means a lot. I will see if I can get that book.

WE are also facing this DBS decision and do not even know if he can or should do the surgery. Doesnt sound like the answer at the moment as I have read other postings regarding it. Any thoughts?
Today was an ok day yesterday a bad one. Never seem to know what is coming but thank you again and I will watch for your posts

By jcoff012 On 2013.01.27 22:30
Dk, that was an amazing post. Thank you.

By dkleinert On 2013.01.30 22:38
I so understand about not having friends anymore. PD does that. People just don't know how to relate to you anymore.....I don't blame them. Unless they have lived through the progress of this disease, they would not know how to relate to someone with it. And there is so much that people outside your life don't see that is affected by PD. How do we explain that to them? How do we explain what is really happening as we see the decline and how it affects your husband and you? It changes you. You have such different priorities than you had before. Much different aspects of your life become so much more important than they ever were. You hear the clock ticking....no one else can hear that clock but you....it changes you and how you relate to others. Not in a bad way, just that you are different now. I sometimes listen to people talk at an event I might go to and so many things that they talk about seem trivial to me now - and I know I was once like that and spoke of trivial things because there was nothing grave and serious in my life to focus on. I guess "trivial" is a bad word....I am just meaning that there are so many larger challenges that we handle now, and trivial things just don't arrive at the top of my list anymore.

I grieved for the loss of a fun, carefree, social life for several years. We were very social as a couple. We were the ones who threw the parties that everyone attended and people were always at our house for one reason or another. My PD husband was a gregarious, fun-loving guy, and when all of that stopped, I really grieved for it, especially at the Holidays when we always had parties and were invited to lots of parties. Superbowl is another tough time when I miss the parties. I find it is just not very easy to "fit in" or have much to talk about that relates to what everyone else is doing with their lives such as traveling, going to events, parties, golf, classes, vacations, sporting outings, on and on.

I know for my husband, crowds confuse him and he becomes really anxious. We did try a Christmas party this recent December that one of my colleagues invited us to. The minute we arrived, Joe had me fill a plate with food for him and he put himself in their dining room in a corner, kept his head down, ate all the food, then grabbed my arm and wanted to go home. He didn't speak to anyone. Several people approached him, however, he nodded and kept eating.....it was not fun for him. He could not stand and shoot the breeze or drink the alcohol with the other guys and he felt so badly about himself, and then I felt sad that I had accepted the invitation.

I will do anything to not increase the lowered self-esteem my husband now lives with. He used to have the biggest ego and a healthy level of self-esteem - he was an accomplished professional, and so that came easily along with all the confidence he felt about himself. Now that his body has betrayed him, and continues to do so with increasing frequency, it is just so hard for him to feel good around other men who are disease free. I work on helping him with his self-esteem every day. He still can make me laugh with his great dry humor, and I tell him all the time that in the 31 years we have been married I have laughed more than in the 34 years prior and then some....he can still come up with solutions to problems even if it takes him days to think about it now. He is an awesome person, and so I have just accepted the fact that having social friendships is just not going to be part of our life anymore, and I am OK with it now. I feel priviledged to give him the focused care and attention that no one else can do.

As far as DBS, I have asked Joe's Neurologist several times about it, and he always says that Joe is not a candidate......I really don't know why - he never gives me a reason, just changes the subject. I have heard good and bad about the results. Maybe go to the search engine here at the top of the page and search for all the posts on DBS.....you will know what is best for both of you and your husband. You will decide after you have the knowledge you need. It is certainly not for everyone. One of my friends on this site a couple years ago said that after her husbands DBS, his memory was so impaired that she wished she would not have done it. Trust your judgement. Really. You will be the best judge of what should be done.

I am honored to be your friend, oshroshr! I live in North Carolina near the Raleigh area in a town called Cary. I developed a friendship with one of the wonderful women here on this site, and even after her husband passed away, we still call each other on the phone from time to time. Spoke with her for over an hour a couple weeks ago. We can correspond outside of here if you need to talk or want to. My email is on my profile page. That goes for anyone else who needs/wants a friend on this very unique journey we are all on.

By mylove On 2013.01.31 00:00
I hear you too. We're earlier in the journey, but still experiencing some of the isolation. We were both introverts to begin with, so he and I really only have each other. Being here is very nice. I too have picked up some wonderful friends that I've been able to chat with outside of the board.

One of the things that frightens me when I think about the future is that we are so isolated. We don't have a church, we have no couple friends, and most of our family is out of town. I have one person at work that I can call a close friend, but other than that, they're all just Facebook friends, for the most part. I feel the need to build our 'circle' now so that when the time comes that I need someone to talk to, there will be someone there. Places like this make it so much easier, because you don't have to get over that 'chronic disease hurdle' first.

I was pretty guarded with my email address in the beginning, but I've since posted it, because I've gained some amazing friends in our 'PD circle'. The bonus is that in at least a couple of cases, the PD husbands have connected with my spouse, as has Al, and I believe they get a great deal out of being able to interact and commiserate. Since we have no local PD group, this has been invaluable.

Please feel free to contact me if something connects with you or you just want to chat. I can relate.

By jcoff012 On 2013.01.31 09:23
Amazingly, we all seem to feel the same about communicating...We look forward to the meetings once a month, but like Michelle, we are in a very small town of less than 10,000, so it is about a forty minute drive to a "real" town...

Anytime, I am here, too...Much love and happiness to all, Jane

By McCall On 2013.01.31 11:46
As for the physical aspects of care, to me it seems a good idea for caregivers if they are at all physically able to take Nurses aide training. This training gives a lot of the practical and physical things a care giver needs to know how to do properly so as not to hurt themselves or the person with PD.
Often community colleges or adult education has such courses.


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