Bringing in Carers

[Samanth]

Dear Tess,
My husband at night takes amitriptyline, paracetamol, tizanidine (antispasmodic), glycopyronium(for secretions) and oramorph (pain). He was taking lorazepam (anti-anxiety) which worked a bit however our doctor wasn't keen as they can be addictive. Despite all this he still wakes up around 6 times per night but the meds do help us. I understand about how specific the positioning has to be. We use a V-shaped pillow which helps somewhat as it supports his neck and arms. I was also wondering if you have a profile bed? We found that getting a pressure relieving air mattress helps relieve pressure on shoulders and hips. The one my husband has is the arjohuntleigh auto logic. It was provided by district nursing.

Your business sounds great. I will be sure to order a box.

[Ellie]

Samanth I know you are medically aware, Samantha, and I am being Devil's Advocate here... but, if Lorazepam soothed your husband, why should his doctor really be concerned about 'addiction' ? He is also on oramorph, which is highly addictive - unless the morphine is instead of the Lorazepam?)

I guess I'm trying to say that convention in med taking in conditions such as ALS is not always the best policy, comfort and calmess are prerequisites for sleep, and sleep enables us to face the day! There are always compromises to be made - meds v respiratory depression, meds v dosage tolerance, meds v sleep etc., I find it's a constant weighing up of pros and cons...

Love Ellie.

[Samanth]

Ellie
He stopped taking lorazepam around 9 months ago when he stopped taking his meds orally. The oramorph is a new addition. I think it is really trial and error. Different meds will work better for different people. Low doses of a variety meds seem to work best for my husband, but unfortunately many wear off by the middle of the night and we have started giving further top up doses in the middle of the night.

I think so much about MND care is weighing up acceptable risks. Risks are associated with everything including eating/drinking and mobilising. Understanding that maintaining independence and quality of life is key. Acceptable risk is very person dependant and will constantly change. I think this is something that many heath professionals and carers not familiar with MND find difficult to grasp and need educated on.

[Ellie]

Morphine sulfate?

I take both Tizanidine and Baclofen at night to mitigate the risk of waking up mid-sleep.

And yes, it's so individual !

[Music man's wife]

Hello Tess, you really do need help! My hubby was like yours, I ended up in hospital with pneumonia and came out to find a carer in situ who is still with us three years later.
Our local hospital has a rehab team who will come out and offer short term help, also we can get night sitters through a local Hospice at Home charity.
I have toughened up quite considerably with hubby it just can’t be all what he wants it has to work for us both.
Just as an aside he takes Lorazepam at night, it settles him so I’m up usually 3/4 times a night.
Could your doctor help short term?

[Tess]

You know in Mary Poppins the song 'supercalifrajalisticexpialiaotious' (and most likely spelt that wrong), some of these drugs sound made up to me haha. I didn't realise that there were so many out there. Comfort is most definately key here so I'm glad to hear that this -cocktail should I call it- is working well for your husband. I just wish a bar of chocolate for him would do the same for sleep as some of these drugs seem to do. If that was the case I think I'd join the prescription queue

Yes we do have a profiling bed and having been told about the wonders of a sheep wool throw to lay on the base we are about to trial this tonight to see if extra padding will alleviate hip and joint pain.

Thanks again Sam for checking out the wee business. It keeps me going and certainly gives me more conversations with my partner about something different than the latest Covid announcements (which feel like they never change).

Despite discussing sleep recently, 2 co codemols and we got a good solid 5/6 hours last night. Amazing! Didn't know that pain killers would have this affect but the GP said just to try it.

Music man's wife I'm sorry it took that to get carer involvement. Decision making is a constant battle mentally. I'm glad to hear that there's assistance in place now for you. We were told yesterday there's a care worker who is available to discuss night care, so just waiting for them to phone, but given it's Friday night it may not be till Monday that I get this call.

[Ellie]

2 co codemols and we got a good solid 5/6 hours last night. Amazing!

Tess, watch out for constipation in your partner, which is a common side effect of co codamol. If he does get it, much better to be prepared and nip it in the bud.

Thrilled to hear you both slept well - long may it last!!

Love Ellie.

[Tess]

Oh dear one solution creates another problem. He gets constipation as it is, so thats good news (she says sarcastically)
Maybe just a short term solution.