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Topic Christmas Blues?? Go to previous topic Go to next topic Go to higher level

By arlenecram On 2009.12.27 17:20
I started a post on Christmas Eve and then didn't post it because it sounded like I was whining... It is so great to come on here and see that there are people that are in the same place we are..Sometimes I feel very cut off from our family and friends.--and if I hear "how are you doing",one more time,I think I will scream!
My husband has had PD for nearly 5 years and had to retire about 3 years ago.I run a daycare in our home--I have 4 infants--and at first he helped me with that .but now he basically sleeps through everything. This year he lost an eye due to glaucoma and has iust been diagnosed with bladder and prostate cancer. In January he goes in for surgery, to have the bladder and prostate removed. The doctors have said it will be a rough recovery due to his weakness from PD.This year has been one of finding replacements to cover daycare so we could go for doctor appointments. I know there are many that have it much rougher than we do ---but I sure fight discouragement now! I would love to give up the daycare so I can spend my time with him, but can't because of insurance! I need to get a more positive attitude--especially for him--he never complains even though he is in constant pain. Maybe it is time for a support group.

By karolinakitty On 2009.12.27 21:26
Hi arlene .... Never ever feel like you are whining. We are all here to help if we can, if he can't we let ya know too. I know the feeling about being cut pdr has often questioned if people think he's contagious or they just don't want to be around "sick" people. I always get the question, Well, How is he? ..Uh ya want to talk to him? yeah that might work, BUT they don't, they know that you are the one who really knows how he is doing they ask YOU.... Yikes a daycare!!!!! i myself would go mad...Bless you for that... Mine can't take the chatter of little ones , the screaming makes him a nervous wreck, so that's out for us.... We have no insurance due to his being deemed uninsurable years ago,so i know what that's like, if you can keep it more power. I'm sure you get run down from the little ones then keeping doc appointments straight, making sure he's eating right, taking meds...yes i can relate somewhat. Mine never complains either. I know he is in pain but he pushes through with dignity, as i'm sure your does....

There are no support groups close to us so i have this and he has some PDr sites as our support. We live in the back woods so life is simple but complicated at the same time. The nearest neuro is about 75 miles, movement disorder clinic 100 in the opposite direction.

Just jump right in anytime , EVEN if you think you're whining, sometimes ya got to and we understand........

By Mary On 2009.12.28 14:25
arlenecram, never think you can't post whether you need to "whine," vent, cry out loud or get advice. That is the purpose of a "support" group, to give support unconditionally. I am sure you are not feeling anything many of us have not already felt. Caregiving is exhausting but mixing it with all of the other responsibilities of life, including our jobs that are necessary to make ends meat, caregiving becomes overwhelming. We can only take life one day at a time and some days will be easier than others, we do the best to brush ourselves off and start again each new day. We have no choice caring for someone we love. In the end, you will feel blessed to have given someone you love such care. Hugs and blessings to you, Mary

By lurkingforacure On 2009.12.28 15:37
I know totally how arlenecram feels and can't count how many times I have wanted to post and bitch but didn't because....well, so many here have it so much worse than I do and why drag them down? I also have wondered if my rant would be considered frivolous and petty, which as I stand outside and look down from above, yes, it would, so I am usually glad, in retrospect, that I didn't post.

At the same time, though, it is very comforting just knowing that the forum is here, for when I really need it. Like many, I come here almost every day, and learn so much from everyone here. I'm glad we don't have the additional pressure to all be Pollyanna here, and that we can just let out the girdle and exhale when it all gets to be too much.

By mylove On 2009.12.28 17:34
Nothing's frivolous when your heart hurts. Sometimes it's just good to have someplace to vent.

By hubb On 2009.12.28 22:15
I think we all feel the need to vent, whine, cry, yell so many times and then when we read the forum, you see those who have bigger problems than you do. We drove (actually I drove since my husband also has macular degeneration & cannot see to drive) to our son's for Christmas. We had a great Christmas together despite my husband's not being able to participate too much - just being in an unfamiliar bedroom/bathroom seemed to undo him and guess that even small trips are now out for us. That's what's so frustrating - having to give up things that you have always taken for granted. But even though he was diagnosed nearly 25 years ago, it hasn't been bad until the last year and a half, and now that old PD is getting such a big hold on him that friends who haven't seen him in a while hardly recognize him. It does make your heart hurt so much to see the man you've been married to for well over 50 years is going downhill so fast and there's nothing we can do about it - seems like old PD wins in every case. We tried to give him an extra 50/100 synamet to keep his legs from jerking on Christmas day and all we succeeded in doing, was making it much worse - over medications are same symptoms as under medications and trying to find that fine line is so trying some times. Anyway, feel better after venting to all of you who are going thru or have gone thru what we are experiencing now. I do appreciate the PD patient's point of view because I get so wrapped up in my own feelings sometimes, I forget about his and reading what they write grounds me. So thanks to Al and Bob, even with a broken elbow, and for their humor which we all can certainly use.

By Mary On 2009.12.29 10:13
I also appreciate input from Al and Bob. As a caregiver sometimes I would forget that this disease was so much worse for Dad than anything I was dealing with on his behalf. Hugs and blessings, Mary

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