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By lilflower On 2013.07.16 12:38
Sorry just needed to vent a little. My hubby is being difficult. He has been having home health for a few weeks do to an infection on his leg from his edema which has caused cellulitus . And today therapy started which his doctor ordered. He is mad at me because he doesn't want any of it but it is necessary. Why can't I choose for myself he says whether I want therapy or not. He did the therapy giving me the evil eye the entire time. So now the therapist is gone and he is in the bedroom pouting. I just saw my doctor yesterday for my foot and he said I can start putting weight on it , so my list of things to catch up on is a mile long now I am dealing with his child like behavior which has put me in a depressed mood and all I want is to hide. I guess maybe its good he is hiding away in the bedroom except I'm not used to this type of attitude from him and I am having a hard time being shut out. I guess that's why the doctor gave me this zanax I guess I'll try one to see if it helps. Sorry for the whining I'll be back later when I'm in a better mood.

By jcoff012 On 2013.07.16 18:05

I have left leg lymphedema from several cancer surgeries (female type/uterine). About a month after the last surgery, my leg swelled up and I could hardly walk, and my doctor immediately sent me to a therapist...I mean, my dr. appt. was at 8, and she had me go to the therapist at 9...I had gained over five pounds of weight since I got up from bed at 6 AM, solely from the lymph fluid in my leg. As my doctor put it, "Jane, if we don't get the swelling down, and under control, you stand a great risk of cellulitus and could even lose your leg." She is NOT one to be excitable, but she believes in doing anything and everything to keep controllable symptoms and side effects under control. I was actually more petrified of this, than in the dx of cancer.

I was scared enough to go...had to have really painful therapy and massage everyday for six weeks, two hours a day...after each session, my leg was wrapped in bandages and we had to learn to rewrap each night, without taking the bandages completely off. Couldn't take a shower or bath, washed myself and my hair in the laundry room sink. Thankful for that, anyhow.

After the six weeks' therapy, I had to learn the massage techniques, practice daily exercises, went back every month for a year for refitting of a leg brace I had to wear every night, and be fitted for prescription compression stockings, which I will have to wear for the remainder of my life.

So, from me to him...TAKE the therapy. It surely beats the consequences of NOT taking it. Yes, it is painful...yes, it is a constant...but, it is NEEDED to help keep the circulation in your leg. It keeps you mobile and keeps you from a worsening condition. If you don't believe me, or you think I am exaggerating...Google lymphedema and/or edema and look at the graphic pictures of people who did NOT seek therapy, or who chose to ignore the routine...Trust me, wearing compression stockings forever when I live in an area of the country with 100+ temperatures in the summer is awful. Go give your wonderfully compassionat wife a hug and thank her for watching over you...she deserves hugs, not anger.

Oh, I forgot the BEST KEEP my swelling down, I have to wear an $800 full leg compression brace EVERY is beautiful (NOT)...velcroed from my toes to my...well, let you guess that one...It is hot, bulky, and FAR from sexy...EVERY night, ALL night long...AND, did I mention (ha) that our insurance only paid $80 of each day's $180 visit, only $430 on the brace, and nothing for the twice yearly replacement braces I still have to have...maybe Medicare will pay more? LOL...

Now, for you, Lilflower...Ignore him. I am serious. You did the right thing. You did what the doctor recommended and you are your husband's best friend in this. If he thinks you are being controlling, ignore him, as long as it is what he needs. And, it sounds like it is. You are a saint, as far as I am concerned. One thing, please understand that therapy and massage for edema is NOT like getting a massage you hurts...and it will hurt for quite some time. The therapist is working with blood flow, lymph flow, and trying to keep down swelling. That is a tall order.

If I sound harsh, I apologize, but I do NOT apologize for being firm about this. It is very personal to me. I cannot imagine what a person with PD goes through, but I DO know what this is like because I live it daily...and for me, it is a constant reminder, six years later, that I now have a chronic condition caused by cancer, I can never really put the cancer out of my mind.

I am glad you vented...why we are here...Hope I helped you...even if nothing else, but to let you know someone does understand...and I agree 100 percent with his doctor and you...I am GLAD he is getting, tell him to keep it up! Hugs to you, Jane

By lilflower On 2013.07.16 19:57
Thanks for sharing. The grizzly left and the Teddy bear is back. He came out and had a totally new attitude. What upset him and got him in a mood was the therapist made a comment I wasn't in the room she said you want to get better don't you? He knows there is no getting better . Yes he can stay as strong as he can for as long as he can but he will never get better. I just have to tell her he is a bit sensitive at times so please be more aware of the things you say to him. Thank goodness it is an easy fix.

By carman96 On 2013.07.17 23:24
So glad your Teddy bear is back!

By jcoff012 On 2013.07.18 18:24
When someone speaks of insensitivity with a doctor or other medical person, I am reminded of the ER doctor who came out to me (Carl was still driving from 30 minutes away) after our daughter was hit by the car, and said, "She is dying, ok"...and I literally screamed at him, "OK? HELL, NO, it's NOT ok!" Then, I realized he was Jamaican, and that was his speech pattern...He was an amazing doctor who visited her and held her hand when they took her three days later for the organ donations. He apologized, I apologized, and we cried that last day...and he even came to her funeral...He was extremly caring, know...Bad circumstances...So, I am reminded that medical people are human, too...and oftentimes mean no harm.

By lilflower On 2013.07.18 21:58
Oh I agree she is a very nice therapist, hubby was just having a bad day and I think he just had to blame someone. Thanks everyone I'm so glad I found you all to vent to, cry with, and laugh with.

By parkinit On 2013.07.19 18:39
I'm glad things are better. After the darkness, there is always a dawn. :)

By olpilot On 2013.07.19 19:01
There are some who are best suited to just handing out aspirin. One I saw before diagnosis just told me, "I'll be sure to note your multitude of symptoms." The only time I've seen him since was at a community event.

By Grammy7 On 2013.07.19 23:58
My husband is declining and it is breaking my heart. He is in the advanced stage and is in assisted living. He is fed all meals. When I take him snacks I have to feed him. I fed him a donut today and I have to remind him to chew it. When I hold a drink to his mouth he keeps his mouth wide open. This week while at meals if the caregiver is not looking, he dumps his drink. Then slaps his hand in the spilled beverage. It is so hard to see him declining. He leans so bad but never complains of pain. I can't understand a word he says. I HATE this disease. He takes carb levodopa, Namenda and the Exelon patch for the dementia. And Seroquel at bedtime. Nothing is helping him... Where do we go from here????

By lilflower On 2013.07.20 16:38
Keeping you in my prayers. My hubby is still home with me and I hope to continue to keep him home. Right now he has good and bad days, it seems the bad days are more often. I HATE WHAT THIS DISEASE HAS DONE TO HIM.. but we will not quit. Some meals there is more food on the floor then his stomach so I feed him a few hours later so he stays nourished. I try to save my tears for when he is asleep. Each time he slides to the floor it gets harder to get him up I am looking into a lift . I am just very grateful for everyone here having a sounding board and knowing I'm not alone in this helps so much.

By Grammy7 On 2013.07.31 23:14
My husband is now in hospice care in assisted living. He is declining daily. I miss my husband so much. It is so hard to see him in his advanced stage. I feel so alone. He was my best friend. I just can't keep crying. I know it's been almost 4 years since his diagnosis of Parkinson's with dementia. I am having such a hard time accepting it. Yet he can't feed himself, walk or even stand, or communicate. I don't know what else I can do for him but pray......

By parkinit On 2013.08.01 01:05
Ah. Grammy. This breaks my heart for you. Just be there. Hold his hand. He will feel your presence and love.

By carman96 On 2013.08.01 15:59
I'm so sorry for his rapid decline. You have done everything you can. Keep praying and cry when you have to. You are there for him and that is important.

By Grammy7 On 2013.08.01 19:19
Thank You. I am trying so hard to be strong......

By Mary556 On 2013.08.01 23:37
Grammy, I'm praying with you, too.

By dkleinert On 2013.08.03 19:20
Oh, Grammy - I am sooo sorry for what you are experiencing now. We all dread this final stage. So many wonderful caregivers have posted similar experiences and all the pain we feel - feeling so helpless to do anything for our best friends, our husbands, our lovers, our loved one. Unlike any other disease, this one makes us watch-painfully-each small step, helpless to do much. Glad he is somewhere that he is given constant care. BIG HUGS to you, dear one.

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