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I made the mistake last night of lying down for a bit before getting DH to bed. I was just so tired. I fell asleep. Got him in bed OK when he was ready - no big issues, but I should know better - took me until 3 to get to sleep. I'm OK, though. I slept until 8 (only 1 night time wake-up to move him) and I can get by on 5 hours. Got some stuff done today and his aide will be here tomorrow. I'll try again tonight to work on the night time routine.
 
Not a big fan, but in the words of Brittany Spears - Oops, I did it again. Fell asleep watching a movie with DH last night. Got 5 hours of sleep, though, so I should be OK.

On another note, last night I was thinking about all that we might be doing, had DH not gotten this diagnosis. It makes me so sad. We both worked all our lives to provide for our family with the hopes of a pleasant retirement. We were getting oh so close, then this. No words. I miss "us" the most. This ugly disease has changed us both so much and changed the whole dynamic of our relationship. I sometimes struggle to remember our life before this - just the "normalness".

DH is having a really rough time lately. He is despondent over things and I'm getting really worried about it. He did try an anti-depressant when first diagnosed, but stopped because he didn't like the side effects. I'm thinking it's time to talk to the Dr about trying again. He struggles trying to fill the hours when he can do so little. I'm wracking my brain trying to come up with something. TV and audible books can only take up so much of the day. He's back in the "I don't want people to see me like this" mode, so getting him to to agree to go out or even have people over is difficult. Any suggestions? I know he likes to sit out in our backyard, but we seem to be back in winter mode again here. I woke up to frost on the ground this morning. He's cold all the time now, so bundling him up in a coat and blanket to get him out is not something he'll enjoy. It's supposed to warm up soon. The couple of nice days we had were such a tease. Crossing my fingers that the spring will really get here soon.

So today is another put one foot in front of the other type day. His aide is here, so after I pay some bills, I have some errands to run.

Hugs to all.
 
Your body grabs sleep whenever possible, it adds up. Maybe you could sneak in some more naps? I work okay on five hours, though living starts at seven. I get how you enjoy some time to yourself in the morning. I had that at night. Most of my reading and writing here was after my PALS was asleep between 1 and 3 a.m.

Hang in there, Jersey! Spring will be there soon.
 
We used Endep and the doctor got him to try it by suggesting it might help him sleep - which it did! But it took the edge of his rage and that was what saved my sanity.

It is SO hard when the hands and legs are too far gone for them to 'do' anything, but they don't want company.
 
Yesterday was a pretty good day. I cooked a dinner and baked cookies for the family of one of the friends who comes to visit DH. He had fallen and messed up his leg pretty bad - had surgery on Wednesday. It felt good to do something for someone else. Somewhat normal, almost.
 
Not sure I have a lot of suggestions. Brian was content to watch TV/Netflix/his computer. I’d have been climbing the walls, but he was ok.

Yes, try to get some naps in if you can. Easier said then done, I know.

Hugs
 
Last night was awful. Another panic attack. And I am out of his Lorazepam. We have to get our prescriptions mail order per insurance, but the refill was just shipped yesterday. Calling his neuro to see if she can send a short term script to the local pharmacy.

I think it's almost a self-fulfilling prophesy thing now. He's worried that he can't sleep, which causes the anxiety, so he can't sleep. And then he doesn't know what to do. I laid down with him and held his hand, but he had me up every 5-10 minutes making another adjustment for him. Covers off, head up, legs up, legs down, stretch hands, trilogy off, trilogy back on, stretch feet, move hands, fan on, fan off - and then repeat. Finally, around 3 AM, I told him he just had to stop. I laid down next to him again and held his hand for a while. He finally did drift off. Of course, then I couldn't sleep. I finally got about 3.5 hours.

As I was getting out of the shower, he called for me, saying he had to go to the bathroom. Pee or sit? He said he thought he had to sit. So I started to get the commode ready. Then he asked if I could do his ROM exercises first. I told him no, that after the bathroom, I was putting him back in bed. He told me then that he could wait to go to the bathroom. He's now been asleep for another 2 hours.

I hate to be mean, but I don't know what to do. He just doesn't know what to do with himself.

On the up-side, a friend just texted me she is bringing dinner tonight. I thank God for those kind of friends.

Off to go check on him again.
 
Oh Jersey...I so wish that I lived near you so I could bring you dinner too! It's the little things that mean so much!
My PALS, my brother always said he didn't want people to see his ravaged body either. I respected how he felt but it was hard. I hope you get a decent nights sleep soon as it really does mean everything for your own personal health.
 
I'm so sorry this is so hard. I am so hoping you can get some rest soon.

Thank goodness for friends that bring dinner. It is absolutely the little things.

Hugs friend!
 
So sorry J, this sounds like a real mix of CO2 build up and panic. There is no way for him to be rational and he really may need a review of things to get this managed better if you can get him to agree to a review.

If not it's basically just an escalation of meds before you find yourself in burn out. You are heading to burn out now :cry:
 
J - I’m so sorry. I remember days/nights like that with Brian. So very hard. Please try to sneak in naps as time presents itself. Forgot laundry or cleaning and get some rest.

Hugs
 
Thank you all.

Both of us slept much better last night. I did get a refill of his Lorazepam, but it got me to wondering. I'm not sure that just knowing it wasn't there caused the panic. If I had not told him, or slipped a tic-tac in there instead, would things have been different? Random thought.

Anyway, I did get him to agree to go back to clinic so we could review everything with his neuro and the rest of the team. He has also agreed to at least consider an anti-depressant. The appointment is in 3 weeks, so I hope he doesn't change his mind in the mean time.

His aide came today and I decided I needed some "me time". I love to drive. It was cold out, but sunny, so I enjoyed just listening to the radio and having the sun beam down. Drove to the shore and got beach tags for the summer season. I don't know if I'll get to use them, but I'm hoping. Walked on the boardwalk for a little, got some fudge and salt water taffy, then drove back home. I feel like a whole different person!

Been pretty quiet this afternoon, so I'm fingers crossed for another good night.
 
Fab news - sleep and some time out!

We used Endep and Chris only accepted it because it was suggested to help him sleep, rather than for what it was for. It did take the edge of his rage, and it did help him sleep so YAY!

You could be right that knowing he was out of meds brought on the anxiety, but don't worry too much about what that means. It's great he is willing to go for a review - try to set up so you have plenty in your arsenal at home to cope with whatever may arise and know what you can give on a really bad night and what should be the regular doses. This might give you both a better feeling of control and help you both rest more.
 
So happy to hear you had a good night and some time out for “me” time.

I have to agree with you that it could have been him knowing about the meds. I do hope he will agree to an anti-depressant. The sleep angle works well and remember they take about 6 weeks to fully ramp up.

Hugs
 
Oh what wonders sunshine can do! And sleep of course.

Glad to hear he is considering going to the dr. I will have my fingers crossed that he doesn't change his mind.
 
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