No PEG admission

[Wailywoo]

Hi,

Hubby was supposed to go to the hospital for his PEG on Monday this week and when I phoned to check on the bed availability they said there was no bed available, so no PEG this week and we go back on a list and wait for another letter.

His mobility is going downhill rapidly and his breathing seems to have changed. We are in the middle of preparing a wet room and downstairs bedroom for him but that won’t be ready until next week. He is having difficulty getting up out of the chair and has trouble walking with the frame now. It exhausts him and he says his heart is pounding after just getting up let alone after a few “steps”. He is getting weaker in the arms and has lost an awful lot of weight.

The OT has ordered a profiling bed which arrives next Tuesday. She has also ordered a hoist to help with transfers from one place to another as it is getting so difficult to get up. The Macmillan nurse is visiting on Monday and we haven’t see the MND nurse since the beginning of July. It seems that everyone is so busy that there isn’t really time to keep all the plates spinning.

I am just basically letting out my thoughts and feelings around this as it is getting me down. Weeks and weeks of clearing out a room to get a wet room and bedroom in then the builders in for 3 1/2 weeks - hopefully finished today. Have to call the gas people out now as the boiler now leaks and not all of the radiators are working. Think I will be holding onto some of the builders money!

I am very worried about the amount of weight hubby has lost. We have an appointment for a riser recliner on 9th October and an assessment for a motorised wheelchair on 7th October - we could have done with those about a month ago!

We are literally limping along until the bedroom is ready next week, when hopefully all will be easier to cope with. I am his main and only carer, but I am not sure how long that will be for.... I am getting very tired.

I am truly grateful for this forum as I am not sure how I would have coped otherwise.

Ok, I’m done for now....

Love to all those who have sent messages and replied to my worries,

Wailywoo x

[nunhead_man]

Good morning Wailywoo

My immediate reaction to this is that you are an excellent manager of all this work you are trying to do - I do worry about people who are not used to organising their own building and caring works have to manage this kind of process because it is complex and difficult.

So my best wishes for you to sorting out this tangled process and I hope you can somebody locally to support you to help you with this management so you can take a bit of a break - in paid work as a manager of this type of complex process at least I used to get some weekends off!

My congratulations to you for getting all this sorted out in the way you have and just hope hubby has not lost so much weight that it affects his survival.

[Wailywoo]

Thank you, Andy, words of encouragement go a long way.

I have to admit that the amount of weight loss and no PEG in sight has me worried that it will affect his longevity. He eats and drinks very little these days and has even started saying to just give him half of what I used to give him. I have to blend everything to a smooth consistency and he even seems to struggle with that at times. Also, blending such small amounts is really quite difficult, but not impossible ;-)

Well, lots of decorating to do and preparations for the bedroom for completion next week.....

Best wishes,

Wailywoo x

[Terry]

Hi Wailywoo;

You do seamed to be very organized.

Does your Hubby have extra fortified drinks with extra calories? These could help keep his weight up and give him a balanced diet.

Hope he has the Peg fitted next week.

Love Terry

[Ellie]

Oh Wailywoo, that’s so disappointing and frustrating about the postponement of the PEG procedure - it’s no wonder you’re feeling down

With so much happening all at once; the building going on and hubby’s progression needing more and more equipment, it’s an overwhelming time for you, not to mention exhausting.

It’s understandable that your husband is asking for smaller meal portions - the physical act of eating is tiring, so eating less is a common result unfortunately, which can lead to the vicious circle of getting too few calories, not having the energy to eat much and so on…

I know this is even more work to put on you, but I wonder if he’d eat little and often? (pureed portions can be frozen, so you don’t need to cook to order every time) Getting more calories into him would increase his energy levels and I don’t just mean fat, but carbohydrates and protein too. He is using his precious bit of energy now just to try to function and, as you’ve guessed, needs to increase his calorie intake substantially.

Things should get physically for you both once his rooms are done and the hoist and chairs arrive but, Wailywoo, you need to look after yourself. You won’t be any use to him if you’re mentally or physically unable. I kind of know the answer to this but, once the PEG is done, would he go for respite to give you a much needed break? Have you enquired about CHC - maybe with hubby’s extra needs he’d be eligible for funded care in your home?

I really, really hope the feeding tube procedure is rescheduled for ASAP. I know you’ve enough plates spinning atm, but his breathing does need to be assessed (maybe when he’s in for PEG?) maybe ring the MND Nurse to visit? You shouldn’t / don’t have to shoulder so much on your own…

Take care.

Love Ellie.

[Wailywoo]

Thanks Terry,

I have some Ensure that I give him, but he asks for only half a drink each time and I find that at bedtime I am throwing it away! Not sure how to get any more calories into him. Trying to ply him with honey yoghurts and small chocolate ice cream lollies, but he seems to have lost interest in eating and drinking. He used to live for the next meal, which in itself says a lot about things at the moment.

Thanks again,

Wailywoo

[Wailywoo]

Hi Ellie,

Thank you for your reply. I just keep saying to myself "things will be better next week". Out daughter is coming on Friday evening and staying all weekend to help with finishing the decorating in the bedroom ready for the carpet on Monday and bed on Tuesday. I just feel that I have been spinning plates for so long now, I guess it has to settle down some time.

I have made him an Ensure drink this afternoon and told him that it may give him some extra energy, but now he has refused the honey yoghurt he usually has after his lunch! Can't win. Seems he is just eating so much and can't manage any more.

They were going to do a breathing assessment when he went into hospital on Monday, but now that will be delayed too. I had the ambulance booked and couldn't cancel it at such short notice - permanently engaged on the phone, so had to just turn them away when they arrived. They orginally said to ask about the bed at 11am and then when I phoned they told me to phone back at 2pm when the ambulance was booked for, so phoned at 1.45pm and they said there was no bed. I am not sure he is going to make it if they leave it much longer...

I think I will speak to the MacMillan nurse on Monday and tell her all my woes. She seems to be very helpful and proactive, so maybe she can take some of the burden. And no, he won't go for any respite for me to have a break. He doesn't think that way. He doesn't put himself out for others I'm afraid. He tends to only see how he himself feels.

Not enquired after CHC. I am not sure he would be eligible...isn't it for medical or nursing care rather than social care? I really don't know much about it. Do they consider his care needs as nursing care?

Well, fingers crossed they are not too long rescheduling his PEG procedure and then we can get some extra calories in him and maybe he will feel less exhausted. I have noticed he falls asleep so easily at the moment. Not good really.

Thank you so much for your support,

Wailywoo x

[Ellie]

No, Wailywoo, lots of people with MND get CHC - though arguably, not enough and often those who do, have to jump through hoops to get it

This is a simple booklet explaining what CHC is: https://assets.publishing.service.go...Healthcare.pdf

You'll see references to a 'Checklist' and fortunately or unfortunately, your husband would score highly on many of the criteria, improving his chances of being awarded CHC.

The Macmillan nurse may have knowledge of it and sit down to go through it with you. Likewise, when he's in hospital, they can apply for it there too. Sometimes it takes more than one application, as it's denied at first

Love Ellie.

[Ellie]

Oops, I forgot to attach the Checklist!!

This link has the Checklist link on it:

https://www.gov.uk/government/publications/nhs-continuing-healthcare-checklist

Click on the link and it opens as a Word document.

Scroll down to page 9 where the questions start and you'll see there are several ' where he'll be in the A' categories, as well as some 'Bs'.

And remember, this will be after he has a feeding tube, hoist, possible NIV breathing assistance (same category as "CPAP" on the Checklist). Always think of how he is on his worse days when reading about CHC...

Love Ellie.

[Music man's wife]

Hello Wailywoo. I'm very impressed with how you are managing with a difficult situation.
I wonder if it would be worthwhile contacting the consultant 're your concerns, failing that leaving a message with the secretary. If your hospital has a PALS department they are also good at looking after your interests.
My husband gets CHC, I was amazed at what a quick and easy process it was. The district nurses handled the application with advise from our local MND nurse.
Best wishes to you both.

[Gillette]

Hi Wailywoo,

I'm sorry you're having such a difficult time. Please do remember to take care of yourself.

Regarding your husband's weight, have you had help and advice from a dietician? Have you tried things like adding cream, butter and/or egg to mashed potato and other foods? Or adding cheese to dishes? So, rather than offering something different, you're enriching the foods he does eat.

[Wailywoo]

Hi,

I am so sorry I haven’t been back on here to respond to your later posts. Hubby was admitted into our local hospital on Wednesday following difficulties with swallowing and not eating for a few days. He was unable to swallow at all and his PEG was rescheduled for 14th October following there being no bed availability on 23rd September.

I’m afraid he will not be going for that appointment as he past away around noon today following problems with his breathing after being diagnosed with pneumonia. They gave him a nasal gastric tube and were going to give him some nourishment today, but he took a dive and left us. We are all devastated as we weren’t expecting him to go so soon. We had been working hard getting a downstairs bedroom and wet room ready for him to use and he will now never use them. It’s so sad.

I just wanted to let you know and thank you for all of your support, kind words and useful information.

Sending love and best wishes to you all.

Wailywoo xxx

I just wanted to say thank you so much for

[Ellie]

Oh Wailywoo, I am so very sorry for your loss - heartfelt condolences to you.

Thank you so much for taking the time to tell us at this very difficult time.

Your husband was a lucky man to have you in his life and I'm sorry he was taken away from you so suddenly and brutally.

I wish you much strength over the coming months and hope you have good family support.

Take care,
Love Ellie.

[Terry]

Hi Wailywoo;

I'm so sorry to hear of your husband sudden passing, it is such a shock.

Hugs, Terry

[Kayleigh]

Dear Wailywoo,

I'm so sorry your beloved husband has passed away. He was a very brave gentleman and you always looked after him lovingly, making sure he was made as comfortable as possible. I expect he was very proud of you for everything you did to help and support him, despite all the very difficult challenges you faced due to his ill-health.

You are a very kind and caring lady and thank you for thoughtfully letting us know about the very sad news today.

My sincere condolences to you and your family.

RIP Wailywoo's husband.

Love to you and your family, Wailywoo,

Kayleigh x