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Topic How does anyone handle this Go to previous topic Go to next topic Go to higher level

By flowers12 On 2016.11.23 22:38
What do you do when your hubby just seems to want to control every minute night and day? He says he wants to get up at 1am to pee then he wants to go to the living room. I get him settled in his chair and 5 minutes later he wants to get up again and go back to the bed. Sometimes just to repeat this again in 10 minutes. This afternoon he said he wanted to pee then after I got him up and walked him to the bathroom he said he didn't have to go, just to wait till I get him settled in his chair again and wants to get up to pee again then denies he said it after getting to the door of the bathroom. He can't seem to let me rest without needing me to wipe his eyes, his nose, brush his teeth, etc. Seems like it's on purpose but I'm sure he isn't aware of what he's doing???? Things are getting worse, he is having a hard time walking most of the time but refuses the use of a walker or the transport chair. I have to walk with him everywhere because he almost falls.

Another thing I learned today was that we need to get a power of attorney for our IRA's. I thought the one we got with our Living Trust was sufficient but was told no we need one for the IRA's. Now I'm wondering how I'm going to approach my hubby with that. He still has times where he understands and can talk to me but not often anymore. We will have to have a notary come to the house and I wonder if he will be aware enough to handle it.
Now that I've written this down I feel like a whiner, sorry, I know some of you have a more difficult time than I do.

By jcoff012 On 2016.11.23 23:03
Hey, Lady, that is why we are all here...to let each other ask questions, etc...never apologize...

We are not at your level yet, so I will defer to others...

Just know this is a horridly draining disease and we all know how you feel.

Vent. Take care of yourself. Much love.

By flowers12 On 2016.11.23 23:17
Thank you Jane.

By exhausted wife On 2016.11.24 07:26
If it gets to be too much, I walk away for a short time. If it is really bad, I remind my love that had he been in a nursing home, they couldn't reply every minute. He gets that.

By mylove On 2016.11.24 09:04
Flowers, I too am not at the stage you're at, but I can assure you you're no whiner.

I have a cat and a dog, and the one thing I want most at 4 am (the time of morning when my hubby wakes up to pee and then I can't get back to sleep) is ONE UNINTERRUPTED CUP OF COFFEE. Between "let me out to pee", "feed me RIGHT NOW", "let me in to eat", "now let me out to poop", "oh wait, now cat wants out", "just kidding, it's raining and cat wants in"....I'm ready to kill somebody. This daily morning ritual happens while my hubby snoozes and gets his best sleep. By the time he shuffles his sweet self down the hallway for his coffee, I'm the grumpiest version of myself. Sometimes all we want is that ONE uninterrupted moment!

And that's only a pale approximation of what you go through. You're amazing, and the universe is blessed by what you do on a daily basis. So never devalue yourself or how you feel! It's completely understandable.

For what it's worth, after the morning hubbub and I've had my caffeine, I look at my dog and think how much I love her and wouldn't trade her for the world, pestiness and all. And I look at my hubby and think how lucky I am, and how much I wouldn't give him up for anything in the universe, and know that someday we will be where you are. I'll do my best to do the things he needs when he needs me.....but just pray for that extra large, uninterrupted cup of coffee before I gotta get started!! :-D

Happy Thanksgiving, hope I made you laugh, and I wish you strength....and caffeine.

PS: cat is now fussing because I was supposed to have stopped this Pacific NW rain in time for her to go out and make her morning rounds of the yard, DANGIT. Just can't win. Lol

By flowers12 On 2016.11.24 11:56
Exhausted Wife I've been taking your advice about walking away for a minute and it helps me not get so frustrated. I tell him I'll be right here when he decides he wants my help. Otherwise I've just stood there waiting and waiting for him to decide if he wants to do something and I get so frustrated.

My Love, we had to have our beloved Weimarner put to sleep after 14 years. I miss him so much, nothing like a pet to give you comfort when you need it the most.

I'm really getting scared about my hubby's dementia, he can get kinda mean and scary. It's getting worse and last night he was so agitated at 11:30 I could only think of one thing to calm him down and that was to take him for a ride. There we were from midnight until 1 am driving around. He was better by the time we got home and I asked him if he would like a cup of hot chocolate and he said yes. I think that helped him fall asleep, at least until 3 am and then he wanted to go back to bed. I pray there will be new medication that can control this behavior. On top of all the other things this scary stuff is just taking it's toll on me.

I look at our pictures together before all this and keep telling myself how lucky I am to have 40 years with him and all but the last few were wonderful. Something I'm thankful for on this Thanksgiving day.

By VioletV On 2016.11.26 08:56
Maybe I'm terrible, but unless his repeated requests involve a risk of a bladder or bowel mess, I'll sometimes say "OK sweetheart. I've got it on my list. You'll need to wait til I can get to you."

And if he is on the toilet and wants to get up, I sometimes will say "I'm going to have you wait a bit, in case your bladder isn't quite done."

I've learned that his distress is not the most important thing in every instance.
And the few times he has been ugly or aggressive to me I will tell him, in language a three year old can understand. You are being mean and scary. I can't help you if you are scaring me. I'll be back to check on you in a couple of minutes to see if you're being safe." I stay within earshot, but where he can't see me. If you use a simple repetition of the same message. "If you aren't being safe I have to walk away," he may begin to learn what you mean and how he needs to behave.

And...something wierd that has made a WORLD of difference for us with sleep is giving him banana tea -- boil 2 whole organic bananas, with just the tips cut off, in about a quart to six cups of water. Boil for 15 minutes or so. I keep a jug of this in the refrigerator and it lasts a couple of days. Six ounces of this an hour before bed builds up his postassium and magnesium stores, and he sleeps through the night. Last night, for example, we went to bed about 10:20 pm. He woke at 3 asking for the urinal, slept again until 6:45. Sleeping now at nearly 9. I can bring a baby monitor down and hear him when he needs me. I'll wake him by 9:15 this morning. He had been waking up every 90 minutes all night -- for several years and I was at a breaking point with it. I NEED to be able to sleep.

Overall, I have to say that we cannot do this if we are drained, exhausted and feeling ill-used. Put your own oxygen mask on first.

By VioletV On 2016.11.26 09:03
Another comment about the POA thing. I learned the same thing about our IRA accounts after I sent our finance advisor the blanket POA.

Morally I believe that if he has given you a blanket POA you can rest your mind about doing what you need to do to get the POA for the IRAs. You have to be able to manage the money you have, and not to have it whittled away with lawyers' fees etc. Good luck with that, it is very important.

By lurkingforacure On 2016.11.26 10:07
Violet, you are such a source of information, thank you for sharing about the banana tea. Long ago I read that banana peels have high levels of dopamine in them and several internet friends were experimenting with trying to eat them, without success as they're awful! But boiling them, brilliant!

We had a horrifying incident with my husband on Thanksgiving evening which I will post about later. Thank heaven we were around my husband's extended family as they took our kids in and provided safe shelter. I'm afraid to make that phone call to the neuro monday, that is going to be hard.

By Trusting On 2016.11.27 16:01
I'm not where you are yet but my nerves have been really acting up the past two weeks. I'm not sure if it is the caregiving or if I have a touch of something and just don't feel good. Either way I'm tired. I can't imagine how exhausted you must be.
I do have a volunteer from the VA who comes for a few hours each week to give me a break, and as much as I appreciate it, what I really want is for someone to let me stay at home and take him out for those few hours.
I can tell him how bad I'm feeling and think he understands only to be asked to get him his tea or bring him his glasses, etc. (the things he can still do for himself). We are all stressed to the max and yes I feel guilty for it, but I'm so thankful I can scream and vent right here and you understand. Blessings!

By moonswife On 2016.12.03 14:40
Oh my goodness.....how I have missed all of you. I identify with each post in some way...and of course that is not always good. Six months ago my husband wanted to see an old friend from Florida (we are SoCal) so we invited, paid for and tried a 4 day cruise that leaves from the terminal 20 minutes from our home near Long Beach. In six months lots changed, never for the better. He puts himself in danger daily, oh...make that hourly. So when the time grew near he decided to garden and fell, broke a bone at L5 and spent 6 days in hospital starting Halloween. The only way they would release him was to skilled nursing (my fingers typed "killed nursing" remembering they almost did that 4 years ago when they neglected to give PD pills and he could not use call button, wanted urinal, fell out of bed, laid on floor for 4 hours) OR have CNA's at house when I was not home. I broke down and hired two for 3 weeks. I still work at the business I own, but live 2 minutes away. Home health came daily and gave injection in PICC line, check foley. All inserted items removed on Monday morning and we left at 3 Monday afternoon. Got home yesterday. Maybe time for Azilect Rx we have been avoiding getting filled. Hearing him bellow "what does it take to get a $#^&@ coke?" at least 3 times sent my stress level beyond the moon. So home now, as I write, I hear him in his shop......PD, skill saw...mmmmm...no!


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