Father struggling to cope

[Englishman]

Hi everyone,

It's been a couple of months since I have last posted and it's been a very tough few months since my Dad was diagnosed.

He has now started to become very weak and his speech is very slurred and has fell 3 times now in recent weeks which luckily haven't been serious and hasn't injured himself bar a few scratches to his back.

What is the worst for him and my mum is that he can't sleep at night. He started getting a itchy feeling a few weeks ago and over the last couple of weeks is up and down and can't get comfy. He sits in his chair for 30mins then he's back up the stairs (slowly) and in bed then out of bed and so on. Our Neuro gave him Diazepam and that didn't help him sleep so she upped the dosage and he still on slept a couple of hours at night. Today we have got some sleeping tablets to see if they work.

Our Neuro has arranged for him to have his bloods checked as she says that this is uncommon in her other patients. I wonder if because my Dad has Non Hodgkins Lymphoma as well as ALS could this be having an effect on him?

I am desperate to help him feel better in himself my Dad was always so strong and upbeat but now he's so down and tired and I feel like he's given up already. He is so stubborn and doesn't want any help from anyone else but his family. I have also tried to talk to him about CBD Oil and electro-acupuncture to help the irritation but he just says I'm ok stop mithering me!

Have any of you got any advice please as I'm not sure what to do and I don't want do nothing as I know my Dad wouldn't just let this continue if it was me or my mum?

Thanks in advance

Englishman

 

[Nuts]

Englishman, I wish I had some advice for you, but all I can offer is moral support. I'm sure that someone with more knowledge than I will chime in.

Wow, your dad has a double whammy. I can't even imagine... Retaining independance is a very common struggle between the PALS who needs it and the CALS who feel anguish at the sight of them struggling. I have actually said to my husband that he needs to consider what he'd insist upon if our roles were reversed. It doesn't change a lot, but it does diffuse some of the tension (he needs to understand me as much as I do him). All of that being said, sometimes the kindest thing that you can do is let him do things on his own as long as he can and try to help him feel normal.

On the other hand, he needs to understand how dangerous those falls can be. That's another struggle that most of us are familiar with.

I wish I had more to offer...

 

[lgelb]

E-man,
Weird, prolonged itching, if it comes from the nerves internally, can sometimes be improved by gabapentin or pregabalin. I would also watch the dryness/heat in the room as it can be caused by "prickly heat" as well. If the room has oil/radiator heat, I would certainly try humidification.

You mention your dad's having to go up and down stairs. Is there a plan for when this is no longer safe/possible, which may be soon?

 

[Englishman]

Hi Guys

Thanks for your replies.

I have always told him and my Mum that he needs to avoid falls. He is so stubborn and rejects any additional support but soon I suppose he will have no choice as things seem to be progressing faster. I can't believe the difference since November when he was diagnosed. I think I am going to order some CBD oil from CBD Brothers.

I find it strange that he is so uncomfortable and can not rest even with meds. He only sleeps for about 3 hours at night and a couple of hours in the day. Has anyone else had the same issues?

Surely there is something causing this and I think it's not ALS based on everything I've read.

Thanks in advance

Englishman