Feeling worse in the evening?

[jayswife]

Jay starts to feel really bad usually around 7pm. Last night was bad. After I brushed his teeth he had a look on his face like he was in pain. He has a hard time explaining how he feels which is frustrating to me because I don't get it. He did say everything hurt - his head, throat (Not like a sore throat), breathing but he couldn't really explain it. He then started to cry and then his legs became so stiff that I couldn't transfer him from the wheelchair to the couch. If I tried one more time he would have fallen from the wheelchair. His legs would not bend. I called my dad to come over to help me. Thankfully they live a few blocks away. I ended up giving him his evening meds and then we laid him down on the couch. Then he told my dad that he's dying and it's happening quickly and he can feel it inside.

Does anyone else experience feeling worse at a certain time of the day like this? I suggested hospice for palliative care which had been mentioned to us. So that they can help with the pain and what he's feeling. He thinks that means I want him to die.

I just don't know what to do.

 

[azgirl]

That last hour before bed is the absolute worst for me. I get extremely uncomfortable and agitated. This results in more cramping/spasticity.I try to hold on until 7 PM and then a healthy dose of M MJ settled me down and stop the cramping.

 

[scaredwifetx]

I am so sorry. I agree that the end of the day is the toughest. Steve's anxiety comes on stronger at night. He has to watch two hours of Big Bang reruns every night because it takes his mind off his breathing.

Is he taking anything for anxiety?

I am so sorry that he said what he did. I have heard those dreaded words and it can do a number on you. He doesn't mean it.

You are both in my prayers today.

 

[affected]

I don't want this to hijack but Kay why do you 'try to hold on until 7pm'?

Does the MM not work so well if you have a dose in the mid afternoon as well?

Allowing pain or anything to build up makes it harder to reduce with any medication.

Maybe a change in routine is in order? Some massage, some medication, some ROM work. I'm wondering if it is all something to do with being up for an amount of time? A 1 hour rest in bed in the mid afternoon, doesn't have to be a sleep but again if it is positional then this may give a little relief.

 

[azgirl]

Tilly, I am pretty sure it is a combination of fatigue and long hours sitting in the chair, which I'm pretty sure is the same for most or even all of us. I do take a 1 to 2 hour rest each day, and use the MM then if I want to sleep. At nighttime I wait because after taking the Eminem they only have 30 minutes to get me in bed before I am unable to help At all then I stay in the bed until around 6 AM the next morning.

Your suggestions of any kind of distraction is helpful.

 

[jayswife]

Thank you for responding. At least I know that others face this although I wish no one had to deal with this terrible disease. All he does is sit in his lift chair all day. He can't do anything else. He doesn't take Valium before bed for anxiety. He hasn't had it in a few days because I was waiting for a refill - the pharmacy messed up. Trying to figure out now who can go to the store for me or sit with jay so I can pick up his meds.

He also gets cold sweats and it's happening more and more. He just said again that he's dying and he can feel it inside. And he's not even saying this while on meds. :-(

 

[scaredwifetx]

Can you get a hospice nurse in the to evaluate him? Can you set up home delivery for the meds?

 

[jayswife]

The clinic suggested palliative care but we're both scared because of insurance we'll have to let our current caregiver go and use one from hospice and they can't always give us the hours we need which are four hours in the morninng so I can go to work. I then work four hours from home to be here with him. I told him we'll just have to figure it out but I'm scared. I don't know who else can stay with him.

Thank you for the suggestion of home delivery, I hadn't thought of that. Not sure where to look to set that up?

 

[affected]

It's so hard when you can't tell if he is in tune with his body, or is just scared.

My Chris started saying in his last few weeks - I can see death.

I didn't know if that meant anything or not.

Definitely regulating body temperatures gets messed right up, so PALS can get hot and cold without it seeming to relate to the room temperature.

jayswife can you do any ROM or massage in the early evening while he is in his chair?
Definitely see if you can get those meds delivered!

 

[scaredwifetx]

Who is your pharmacy? You can have it called into a pharmacy that delivers. Walgreens does. Call his doctor and ask for help. They will know. Do you have a local ALS association? If so call them and they will send someone out to help you figure this all out and may be even able to help you get someone to pick up the meds. They may even be able to help you figure out the best steps to take right now. Hugs! I know how hard this ride is. You need some kind of medical care in there. Your doctor can order a nurse to come out and evaluate the situation.I work full time and understand how hard it is to have to juggle both.