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Topic I'm new, sad and depressed Go to previous topic Go to next topic Go to higher level

By ILoveWil On 2011.07.07 01:41
I am new at posting but 4 years ago I began reading all the great advice this forum gave on caregiving for parkinson's disease. Now today I am in, what I feel are the last stages of my dear husband's disease. After he fell 3 weeks ago, with hip surgery and now 2 weeks in Rehab, I am losing him. Today I unashamedly held him and sobbed almost uncontrollably in his wheelchair, wanting to call him back, talk to me, hear me...telling him how much I love him and knowing in my heart of hearts that everything in my life with him has changed forever. I felt overwhelmed with sadness and loss. I left the care and rehab center and cried all the way home. On June 11th he was talking to me, walking around our log home porch, eating by himself, watching the sunset in the Smokies with me and now today after spending 3 hours with him, he could not speak a word to me and was zoned out. I am feeling very sad and depressed. My wonderful family doesn't know how broken I feel because I keep an upbeat spirit for them. They might think I have lost my faith in prayer if I let them know. I don't know any of the dear people who post here but tonight I feel a cushion of love and support from you. I can hardly see my keyboard for crying but thank you for sharing your pain with me too. I will pray for you as I hope you will pray for me. It feels so much better to hear your stories and how well you all are coping. I hope I can do as well as you have without losing it. Thank you for sharing so beautifully.

By plcpainter On 2011.07.07 02:07
Dear ILoveWil,
I am so sorry for you and for your husband's recent nasty fall, subsequent surgery, and downward turn. How devastating for both of you! PD is such a double edged sword that wounds the hearts of caregivers and afflicted alike. We cry for what our loved ones have lost and suffer. We cry for what we have lost and suffered.
Recently my step-daughter called and asked how I was doing and I started out trying to be upbeat but ended up sobbing into the phone. I was ashamed of myself for allowing this to happen but the funny thing was, it has brought us much closer. She understands how deeply I care and how hard I'm struggling. Even Jesus wept and He certainly didn't lose his faith in prayer! :)
Your post is a bittersweet reminder how quickly circumstances can change and how important it is to savor the sweet moments in our lives together. I took my husband to the art museum on Sunday and that night, as we were lying in bed, he said quietly, "I had so much FUN today". It was a magical moment, not unlike watching the sunset over the Smokies I'm sure!
What wonderful love you two must share. Love pervades disease, time, distance, and speech. I'm sure our loved ones feel how much they mean to us. Be gentle to yourself and write again!

By susger8 On 2011.07.07 08:51
Please don't give up yet! My dad, who is now almost 89, broke his hip almost exactly two years ago. He did not do well in the hospital or the rehab center -- he was very confused and had a hard time communicating. Being in an unfamiliar environment really affected him for the worse, but when he came home, he did much better. His hip took most of a year to heal completely, but after that he had no pain and no weakness in it. Please have some hope that your husband will improve -- it is completely possible.

Sue

By mylove On 2011.07.07 13:06
I had the same thought as Sue. Please don't give up hope! This board is filled with anecdotes about drastic backslides following illness, injury or hospitalization, followed by a gradual return to 'normal'. Even something as minor (to us) as a urinary tract infection can cause a whole lot of disturbance, up to and including confusion, hallucinations and loss of body functions that previously had not been an issue.

It isn't uncommon in this disease for any medical disturbance to cause great 'ripples' in the progression. What you're seeing may not be the end result, but just the tsunami that the fall has caused. As Sue says, being in an unfamiliar environment can complicate this process and draw it out longer.

Hang in there, have faith, and stick with us. We will support you.

By ILoveWil On 2011.07.07 13:30
WOW is all I can say. Thank you so much for your wonderful words of encouragement today. You really make me feel empowered to make skidmarks by my bed and get out there and find the answers. My faith is renewed by your kindness and thoughtful responses to my unbelieveable sadness last night when I joined this forum. I feel the prayers of everyone today and I go into this meeting at the Rehab Center with some hope I didn't feel yesterday. You have given me some strategic questions I can ask in my quest for answers and making a decision about when to bring him home. I like your comments about the environment being responsible for his confusion. I appreciated your comment about how detremental an UTI has on a patient because he is now in quarentine at the center because he contracted this infection. Also he is on antibiotic too which members of the forum have also addressed as a wipeout of the effectiveness of his sentimet. I may have mispelled some of these medical words but boy am I feeling empowered by all the great information yaw'll have given me. I feel so blessed to have you all as my new friends, or I should say my team of professional counselors. Thank you - thank you. I will continue to watch for your great posts and learn from you how to cope and how to fight this terrible disease. Today I am full of hope because of you.

By karolinakitty On 2011.07.07 15:03
ILoveWii....I know you haven't given up the faith..i can tell my your posts....but remember this what the Father sees is your heart, what the world sees is your outward appearance....if you need to cry...cry..if you need to tell the world that you are hurt and crushed because of this..do so... it does you no good as a caregiver to hold it in so the world won't see....I used to go to a Word of Faith church and I know that if you dared mention you had a cold, they were on your back about not having faith....baloney......God knows the heart!

Second, I know in a smaller way what you are feeling.... my guy has had many downfalls lately, with docs ready for him to keel over from a stroke any minute... now a staph infection that could take him out....BUT.... he will rebound... we got good news today...and i refuse and he refuses to let it stop us from the path we are on.....
As mylove said, many here have stories of bad bad fallbacks.. how antibiotics can run havoc ..how infections run havoc.... they can rebound...
Like you I hope he can come home.... I am sure his meds aren't given at the same time you give them.. and many other factors that take the PD patient out of their comfort zones..

I told our PA that if the hospital wouldn't allow me to administer his drugs then they had better expect me to be there 24/7 to make sure they wer given right and in the right doses... that i would be ther with his Gatorade and anything else i could do to make sure he was getting exactly the same as he got at home..... needless to say.. he was not hospitalized at this point, but, she know that any future considerations will be dealt with the same..... as caregivers we need to fight for our loved ones no matter what THEY say........

I sure hope he comes home soon and your meeting went great......we will be praying.....

By Elly On 2011.07.07 22:52
I am praying for everyone in this forum.

By lvmymom On 2011.07.09 19:13
It is okay to be sad. The world will go on. No one will mind. You don't plan on wallowing in your sadness. Keep it in a jar on a shelf and take it down once in a while and allow yourself to open it and feel the sorrow. Then after about 10 minutes put it back, close the lid and place it back on the shelf. It will always be there ... and you can go back to visit once a day or a couple of times a week...

Knowing that it is there and always will be; acknowleding the true feelings surrounding your situation is a good thing. It is all yours. Safe and always there for a short visit .... when you start to cry sometimes it seems like it is too much and you wonder if you even want to stop .... that is when you pull yourself together and put it back in the jar and get on with living.

And as in previous posts it is true ... After hip surgery it takes time for the medication and anesthesia to get out of the system and harder for those with neurological diseases. It may take several months. I bet it will be much better as time goes on. Breath deeply - I hope you find peace of mind.


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