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Topic I need to rant Go to previous topic Go to next topic Go to higher level

By flowers12 On 2016.06.28 22:50
I feel like screaming!! My hubby is having an extremely bad afternoon and evening. He can't eat by himself, he just stands bent over staring and is not communicative at all. I have to ask him over and over any question and I only ask him to say yes or no and he won't say anything. I can't understand a word he's mumbling. I can't do anything because he calls me constantly just to "see me." On top of getting no sleep last night because he wanted to get up and down up and down I think he uses the excuse of having to pee just to get me to be with him because he knows I'll jump up to help him. Every hour is not the norm, every two is and he doesn't even go. I already took him for a 2 hour ride earlier today. He's interrupted me on this short rant 3 times and I've got a headache. Sorry for ranting but I have no one else to say it to. I know it's not his fault but I'm so stressed. Ohhhhh, I do feel a bit calmer now just being able to put it in words. I'm going to get someone in to give me a break before I lose my mind.
Sorry, I just had to get it out, I hope I don't upset anyone. I hate this disease.

By mylove On 2016.06.28 23:15
Sometimes there just is no fixing it, just enduring it. Rant away... ((((Hugs)))))

By flowers12 On 2016.06.28 23:30
A virtual hug is welcome. I wish I had someone here who could give me a real big hug. I need one most of the time. Thank you!

By lurkingforacure On 2016.06.29 00:23
I'm so sorry you're having such a hard time, but selfishly, I actually felt relieved reading your post, because I have much of the same at my house. My husband yells for me to come running, and when I get there, it's NEVER anything critical! It'll be a button he can't undo, or his blanket isn't right, etc. and etc.

I do think misery loves company, definitely. My husband will come sit where I am working, and sigh, grunt, moan even, and when I ask if he needs anything, he'll say no, but continue to sit there making noises. I cannot concentrate, and usually just give up working and go do something physical like vacuum. Our oldest has told me on several occasions that "daddy's a lot better when you're not around":(

The bent-over-barely-audible mumbling drives me over the edge. I can't even guess how many times I've had to ask him to repeat things, and I know he hates having to say the same thing over and over. Some days he can talk normally, but other days, whew, it's a real challenge.

it's like mylove said, not much we can do at times like this but endure. Hugs:)

By jcoff012 On 2016.06.29 11:50
((((((Marilyn)))))) Didn't see this til right now! This stupid disease just takes and takes...but people like you give and are loved and appreciated, even if it doesn't seem so at times. Hang in there. You ARE appreciated and loved.

By Mary556 On 2016.06.29 12:21
Flowers, does your DH take antidepressant by any chance? My PWP's doc had rx'd one for her but it had the side effect of keeping her awake at night. We did not last long with that. Sometimes my Mom was afraid she would pee in her pants and want to go potty when she did not really need to go. Sometimes she would swing her feet to make the motion sensor alarm go off so I would come in the middle of the night. She didn't really need anything but wanted to see if it was working. My Mom had anxiety attacks at some point and her neuro put her on the lowest dose of Seroquel at bedtime. I had read about different effects and was resistant to starting something like that but my Dad thought it would improve her quality of life and wanted to go ahead. Mom started to sleep like a baby through the night (but she was still able to wake up and walk when she really had to pee, usually once during the night). Seroquel does not help everyone but was a blessing for us. If you pass this by your husband's doc, there may be something elso to try. though your PWP may not appear outwardly anxious, wanting to see you and calling for your attention as you and lfac described seems like it could be a form of anxiety to me.
Adding my virtual (((HUG))) for you.

By flowers12 On 2016.06.29 14:52
Mary556, No my DH doesn't take antidepressants. I will ask the neurologist about it next visit. He does have frequent shortness of breath and his legs swell. He's had a lung test that was normal and he's had all kinds of blood work and a ekg in the past. The next is an appt with a cardiologist to make sure there is nothing going on with his heart. I feel his shortness of breath could very well be anxiety because when I distract him with playing cards or going for a ride in the car he's fine. I wish there was a magical formula that could get everything working and at least give the PWP some consistant comfort. Other than PD he doesn't have any other medical issues.
Thank you for the HUG

By Mary556 On 2016.06.30 13:07
Marilyn, sometimes (oftentimes) I do not word my reply very well and just wanted to clarify what I meant to say.... If your DH were already taking antidepressant, that might be something to ask his doc if he could STOP.
It is a stimulant that can cause someone to be anxious or awake all night. My Mom tried two different antidepressants with bad results. One caused her to be hyper ("overstimulated" was my Dad's word) and the other caused delusions.

Seroquel is a tranquilizer and caution must be used, but in my mother's situation, that was what finally helped her to sleep through the night. I read something about PTSD patients in VA hospitals who had not slept in years; Seroquel was the only drug that gave them any relief. But other articles describe it in such a way that I did not want to give to my Mom at first. My Dad read the warnings and decided we should proceed. It is difficult to know what to do. You could ask your husband's neuro and PCP, get more opinions.

My Dad has history of heart disease and two heart valve replacements. He takes Lasix (furosemide) to keep the fluid from building up in his ankles and legs. (He gained 10# in two days when that pill was temporarily discontinued a few months ago.) My father's nurse explained to me that the water can also collect in one's abdomen or lungs. So that might be one more possible cause of shortness of breath. It is good to limit salt, something you probably already do. The cardiologist assessment will be helpful for your DH.

Sometimes it is difficult to know if it is anxiety causing shortness of breath or shortness of breath causing anxiety. Either way, some remedies that helped my PWP were: a wedge pillow for sleeping (it is easier for asthmatics or anyone to breath if head/shoulders are elevated or when sitting upright), pursed lip breathing, drinking sips of very warm water to relax respiratory tract, listening to soothing music, saying prayers together out loud, listening to a talking book. (You gave me a happy memory about playing cards... when my Pépère had dementia he could still always skunk me when we played cribbage and my Mom was pretty much the same way.)

The home health aide who gave my Mom her weekly baths was very good at eliciting answers. Cindy would crouch down at my mother's eye level and get very close to her face (as close as dancing), call her by her pet name and ask what was on her mind. The times when I was able to draw out an answer and understand what was bothering my mother, to reassure her about some specific worry, she said she felt much better.

I hope there will be some relief for you and your hubby soon, Flowers.
Prayers for all caregivers and their loved ones.

p.s. sorry this is so long.

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