Bringing in Carers

[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.

[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]

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.

[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?

[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 !

[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]

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]

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.

[matthew55]

Hi Tess, please look after yourself so you can look after others. We are not machines are we? 👍😉x

[Tess]

Hi Sam,

I've never heard of the snoozle before, so will definately check this out- thankyou for the suggestion. He's not got use of his upper limbs and this is why turning right now has been such an effort. We're in the process of trial and error with bed comfort but hopefully small changes like maybe getting on of these might help. I'm finding when repositioning him from one side to another it's quite specific. His head has to be placed at certain part of pillow so his neck does not get sore, his hands and elbows in a position so his wrists and fingers aren't stuck in an uncomfortable bend. We now use wrist/hand splints to go to bed with to avoid the wrist pain also.

Carrying him up the stairs would be a huge task for you! I completely get how you feel- the exhaustion. We did try various sleeping pills previously but non had an effect. I have heard that anxiety pills sometimes do the trick for a better sleep, more deeper sleep but unsure. Out of interest what pills is your husband on?

Call me crazy but having been put on furlough last year, I started a baking business for UK delivery called 'Blether Box'. I had to have another focus aside from caring and wanted to try help others. Baking but with the twist that each box contains 4 blether cards to take your mind off the current. The concept is to encourage people to talk to one another about new things albeit by phone call, video call or distanced walks. As much as it came from a good place I was getting fed up having the same conversation with friends and family about the weather and how I was doing.
The focus of it has been mental health awareness and oddly it's done wonders for keeping me sane and having a focus myself. I bake once a week which is enough with my current life and caring etc, not to mention plenty of marketing involved with it on social media. I've not advertised my current situation of my partners diagnosis through the business, however in months to come I most certainly will be creating a fundraiser of sorts.

While i'm posting this, I might as well give everyone the details for the business, in case you see this post and want to check it out. I tend to focus on instagram and luckily there's settings that share the content on FB at the same time. Currently running an Easter Box in two sizes (Creme egg brownie and Mini Egg cookie bake)

Facebook: bletherbox22
Instagram: bletherbox_

[Samanth]

Dear Tess,
My story with my husband was so similar. He had frozen shoulders on both sides from quite early on in his diagnosis so slept poorly, needing turned many times per night. His MND also progressed very quickly making manual handling very physically exhausting. I was having to carry him up the stairs everyday. I got to the point that I did not feel safe driving as I was so exhausted. My husband refused all care until I got to breaking point mentally. It found it very hurtful that things had to get to that point before he would accept care but he was just so reluctant to have the invasion of his privacy. After he agreed unfortunately we then were unable to get any care and we ended up moving to N.I. to my parents were all care is provided free of charge.

I have a few suggestions that I learnt along the way: It is great that your family are keen to help maybe they can help with other things such as cooking, cleaning or shopping to give you change to have a nap during the day. I found that found that having having something to do outside of being a carer really helped keep my sanity. It might be hard to find the time or energy but it really helped me. You mentioned that your husband wasn't on any drugs. Starting on some may help him sleep for longer periods during the night. There are also aids that that would make it easier to turn him. Initially we used snozzles(https://www.thesnoozle.com) before moving onto wendylett sheets.

We currently have Marie curie carers that come in 2-3 times per week to do night sits. This might be somewhere to try if you are struggling to find care.

Sam x

[Lynne K]

Google luck Tess x

[Tess]

Thanks for the responses. There is definately a vulnerability with letting anyone come into your home and hence the reason we are looking at 1 or 2 nights to begin with, to ease in. I always try and put myself in the persons position and its a horrible thought that if you didn't want something but it's forced upon you. I thought to simply turn him over from one side to the other 6 times throughout a night wouldn't be too difficult- no machinery involved and on the list of care duties one of the less vulnerable tasks for him to have a stranger doing.

Oddly (for some) the day time for me is absolutely fine for now, I can do moving and handling, feeding, toileting, showering. It's if I'm running on 2/3 hours sleep and then have to do the day care, this is what's causing me to be in a place of desperation for help. The bazar thing is, I often see us as not too far along (he's on no meds and can eat normally, can talk (albeit more faintly) and can still click a mouse for his computer) but then again with so many progressions there's different levels of what's manageable, maybe it has crept up on us and we're further along than I thought. I remember him telling me as soon as he couldn't manage the bathroom by himself, he didn't want to be here and then I also remembering us both sobbing when we got to that point last year and here we are.

I completely understand that not all individuals want family to see them a certain way as an adult and so carers for some is a preference and following our discussion is his preferred route however reluctantly.

We are on a list to be assessed for a full care package, but this more urgent short term care is being looked at now- fingers crossed they come back to us soon.

x

[Suefromwakey]

Tess what an absolute dilemma - one I have not yet faced - this whole thing has aged me - I cried everyday for at least a year when a consultant used a throw away comment "prepare for MND" you are young and have far more in front of you that I - its hard to know what to say as you end up going with the flow and most certainly do not look after yourself like you used to - how can you? its an impossible situation,

I shall think of you, best wishes

Sue

[denise]

Hi tess
you really do have to think about yourself. I know its difficult but you will make yourself ill without any rest. You could also end up breaking something through tiredness. Then someone will have to help and you might not be in a position to choose who or when.

I look to see how you're getting on and worry as I am so much older. But I do think there are times when you need to step back and get some help.

Lots of love Denise xx