Tired newbie :)

[Melanie_1910]

Hi all,
My first post will probably be an offloading, I’m usually OK, get on with things etc but tonight I’m tired, sad and a bit alone. If you manage to read this, thank you

Its 3am and I’m up for about the 7th time tonight supporting my husband. He was diagnosed with Motor Neurone Disease in July. On a side note, I work for an MND charity so am all too aware of the disease and it’s impact and what may come. In June he was independent with everything, did the housework, cooked meals etc. He’s 59 I’m 48. He has deteriorated quite quickly. Over 3 months later, MND has taken away his ability to walk, eat independently (I am feeding him), use the toilet, move his arms etc and is now starting to affect his breathing. In 3 months, the house has gone from a home to a state of chaos (bed downstairs, hoist, wheelchair etc), it’s a two up two down house and so space is tight. We have always been 2 steps forward and 3 steps back with this disease as every day something new happens which further takes away his independence. Life is no longer the same.

I work full-time but work have been brilliant I have to say. It’s a good job as most of the day and night is spent supporting my lovely husband. His daughter has arrived to visit yesterday for 2 weeks from abroad. Yesterday was very emotional for them both and I left them to have quality time together. Tthey had a long heart to heart (much needed and probably one of many over these 2 weeks). However, this is something I feel we have not really had. I have spent the last 3 months trying to keep it together emotionally for him and feel if I did let it out it would never stop (my dad died in Feburary after 7 years of lung cancer - it’s been one of those years). I spent yesterday running around the house, cleaning, getting the bedroom nice for her and her partner. Supporting husband in between, picking them up from the airport, getting back, preparing evening meal for them all, feeding husband (not getting chance for lunch or tea) and then sitting it out whilst he and his daughter talked. Then, once all were in bed, I settled husband, got his medication, helped with cleaning teeth etc and then got ready for bed on the couch (it is comfy). Half an hour later he needs turning in bed, another hour, then another and then help with a wee etc etc. I haven’t stopped and feel so bad for feeling resentful that he and his daughter got ‘quality time’ whilst I just seem to spend all day and night caring and not being much else. I just take a few deep breaths and get back on with it.

On the positive side we have a great health care team. The palliative care OT and Physio are in contact weekly and visit every weekly/every other week and we see the specialist MND Care Team at the hospital. I also have a carers assessment later this week and plan on getting every support I can in this way. A few hours a week off will do me the world of good - oh to get my hair cut which now resembles a nest.

I’ll be OK in the morning though - that’s what we do isn’t it? If you got this far, thanks for reading and much love to all carers out there! <3

[Trisha_1909]

Hi all,
My first post will probably be an offloading, I’m usually OK, get on with things etc but tonight I’m tired, sad and a bit alone. If you manage to read this, thank you

Its 3am and I’m up for about the 7th time tonight supporting my husband. He was diagnosed with Motor Neurone Disease in July. On a side note, I work for an MND charity so am all too aware of the disease and it’s impact and what may come. In June he was independent with everything, did the housework, cooked meals etc. He’s 59 I’m 48. He has deteriorated quite quickly. Over 3 months later, MND has taken away his ability to walk, eat independently (I am feeding him), use the toilet, move his arms etc and is now starting to affect his breathing. In 3 months, the house has gone from a home to a state of chaos (bed downstairs, hoist, wheelchair etc), it’s a two up two down house and so space is tight. We have always been 2 steps forward and 3 steps back with this disease as every day something new happens which further takes away his independence. Life is no longer the same.

I work full-time but work have been brilliant I have to say. It’s a good job as most of the day and night is spent supporting my lovely husband. His daughter has arrived to visit yesterday for 2 weeks from abroad. Yesterday was very emotional for them both and I left them to have quality time together. Tthey had a long heart to heart (much needed and probably one of many over these 2 weeks). However, this is something I feel we have not really had. I have spent the last 3 months trying to keep it together emotionally for him and feel if I did let it out it would never stop (my dad died in Feburary after 7 years of lung cancer - it’s been one of those years). I spent yesterday running around the house, cleaning, getting the bedroom nice for her and her partner. Supporting husband in between, picking them up from the airport, getting back, preparing evening meal for them all, feeding husband (not getting chance for lunch or tea) and then sitting it out whilst he and his daughter talked. Then, once all were in bed, I settled husband, got his medication, helped with cleaning teeth etc and then got ready for bed on the couch (it is comfy). Half an hour later he needs turning in bed, another hour, then another and then help with a wee etc etc. I haven’t stopped and feel so bad for feeling resentful that he and his daughter got ‘quality time’ whilst I just seem to spend all day and night caring and not being much else. I just take a few deep breaths and get back on with it.

On the positive side we have a great health care team. The palliative care OT and Physio are in contact weekly and visit every weekly/every other week and we see the specialist MND Care Team at the hospital. I also have a carers assessment later this week and plan on getting every support I can in this way. A few hours a week off will do me the world of good - oh to get my hair cut which now resembles a nest.

I’ll be OK in the morning though - that’s what we do isn’t it? If you got this far, thanks for reading and much love to all carers out there! <3

hell

Hello there yes i find i am like that to tired moody i have health problens and look after my mum also i dont seem to sleep for nights its really tiring work but i will alway be here for my mum until the end she is still in hosptail yet she been in 4 weeks now kidney failure gave her 6 months but tbh i do not think she see 6 months she that poorly thank you

[bowlingbun]

Welcome to the forum.

You can’t deal with this on your own.
It’s time to ask your GP to make an urgent referral for NHS Continuing Healthcare so that a team of carers can help you at home.
Are you having any counselling?
Have you spoken to your local hospice?
When my dad had cancer our local hospice had staff to help at home, if needed.
Have you applied for Attendance Allowance?

[Broostine93]

Hello, Fellow MND Carer

I care for my Gran, who was diagnosed with MND in March this year (though displayed symptoms for a year before that).
It is so hard, not just for the MND sufferer, but for their ‘main’ carer, too. You absolutely have to take care of your emotional wellbeing so the carer’s assessment being done will certainly help you with that.
I know exactly how you feel RE the treatment of the daughter vs the treatment of yourself. I used to feel so resentful that my Gran would put on a smile and spend time talking (when she could talk properly) to other family members about ‘normal’ things, whereas I would get barked at to do this or clean that or move this there or bring this here. I felt like a little slave at one point, if I’m being brutally honest. The thing to realise is that your husband treats you differently because he thinks you can handle it the best out of everyone else- he will be thinking his daughter won’t be able to cope as well, emotionally, as you. It’s like a backhanded compliment, in a way! You must tell him how you feel, though- if you don’t, it will eat away at you until all you feel is resentment (and who needs that on top of all MND has to bring to the table?)

It’s a good thing that you work for the MND charity (MND Association, by any chance?) as you will know what to prepare for, when the next ‘dip’ in the disease occurs (as you’ll know, playing catch-up with this disease is worse than being overly prepared for the ‘next stage’). Is your husband on board with this? Reason I ask is because my Gran was always 2 steps behind the disease progression (basically in denial that her legs were on their way out and in denial that her swallowing was starting to fail her- which has now resulted in the palliative team confirming she’s left it too late to have the PEG fitted).
One thing I will say is this: if you can book some time off work for yourself, do it. Do not tell anyone you have booked the time off (especially your husband). You will feel guilty to start with, but you need this time to yourself. Go and get your hair cut- you absolutely deserve it! (You could say you called a mobile hairdresser into work during your lunch break, if you need to!) Honestly, I was about ready to throw in the towel- I was emotionally exhausted, depressed, had zero hope, complete disregard for my own health and wellbeing because I thought ‘what’s the point?’. In the end, I just threw caution to the wind and realised that I was saving my annual leave days for potential hospital visits (and what would I actually be able to help with if I rushed to the hospital from work if she had pneumonia? Absolutely nothing.)- so I decided to take some days for myself. It’s the best thing I could have done. It finally gave me chance to process the diagnosis and it gave me a chance to ‘see through the fog’. I’ve felt more in control, calmer and been a better carer for my Gran ever since that break.

I wonder if you’ve been put on the waiting list for the MND Palliative Therapy? If you’re not, please ask for it. It’s so, so helpful to be able to vent/cry/rage/moan/whinge to someone who has seen it all before (and someone who won’t judge you for the things you say!)

As a final note (as I realise I’ve rambled on for quite some time now! Oops!), please do feel free to PM me whenever you like- it’s rare to find another MND Carer on this forum and sometimes you really do just need to talk to someone who truly understands what it’s like to live with it day-to-day.

I wish you and your husband the best <3

[Rosemary_1706]

I echo Bowlingbun’s comments. You now need specialist nursing care and regular carers multiple times a day. Speak to the palliative care team about care at home or in hospice. See if you can hire a cleaner, and when the daughter and partner fly in, have them pay for a car, and sort out their own bed!

You need to conserve your energy - what you have left!

[thara_1910]

Definitely speak to your GP about NHS CHC. Request a assessment.

Who knows, you may qualify? Talk to the medical team, they should be able to help you access more support at home. My caring situation is different, but the feelings are practically the same! At one point I felt as if my life revolved around test results, appointments, and special needs. That was when I realized things needed to be modified so that I could carry on. Also beg literally for a needs assessment.

Have you had a needs assessment yet or not? The council can help with that, call up on Monday. Are you on any waiting lists at the moment? Find a cleaner, and see about getting a car. Alternatively you could look into assistive non public transport schemes. My area has a transport scheme for those with impairments. Would that work? Or you can give Motability a call for help. You can find the number on their website.

Home

What benefits have you applied for?

The one that comes to mind here is PIP. Citizen’s Advice is a good source of information on all things benefits. Here is the benefits section of their site at Benefits - Citizens Advice or you can contact them asking to talk with a benefit advisor.

[Chris_From_The_Gulag]

CHC / NHS Continuing Healthcare ?

Main thread :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998

I also recommend a strong mug of coffee before starting to read that thread.

[bowlingbun]

Some insurance and pension policies have a critical illness clause, if someone has a serious illness, they can get a lump sum advance. My brother was diagnosed with terminal cancer when with his wife in Uruaguay, unable to fly home. I had to empty and sell his house, and went through every bit of paperwork - 10 years of filing not done!!! Anyhow, I found he had 2 policies which paid out a total of £20,000 pounds when he needed it most.

[Melanie_1910]

Welcome to the forum.

You can’t deal with this on your own.
It’s time to ask your GP to make an urgent referral for NHS Continuing Healthcare so that a team of carers can help you at home.
Are you having any counselling?
Have you spoken to your local hospice?
When my dad had cancer our local hospice had staff to help at home, if needed.
Have you applied for Attendance Allowance?

Hi there,
Thanks for your reply. Yes, we have got PIP (hubby is under 65 so qualifies for this rather than AA). He got this quick quickly through the fast track terminal ilness rules. The palliative care therapy team from the hospice are involved (OT and Physio) we also have a dietician and speech and langauage therapist and specialist MND Care Team. In regards to the hospice, our OT there is referring to MacMillan Nurses who also now help with conditions other than Cancer.

In regards to CHC - hubby will not yet qualify for this funding but keeping an eye on that one. In my work I support people with MND in accessing the CHC funding assessments etc and know from the domains, husband at present would not meet enough of these yet. However, the disease is constantly changinga nd over the last few days his swallowing is now becoming effected so we will keep an eye on that one.

Counselling isnt something I had considered although I had 16 sessions of CBT last year which worked really well. I may look at referring to the local hospice for some counselling - after this weekend I feel I need it

Thanks again for your reply x

[Melanie_1910]

Definitely speak to your GP about NHS CHC. Request a assessment.

Who knows, you may qualify? Talk to the medical team, they should be able to help you access more support at home. My caring situation is different, but the feelings are practically the same! At one point I felt as if my life revolved around test results, appointments, and special needs. That was when I realized things needed to be modified so that I could carry on. Also beg literally for a needs assessment.

Have you had a needs assessment yet or not? The council can help with that, call up on Monday. Are you on any waiting lists at the moment? Find a cleaner, and see about getting a car. Alternatively you could look into assistive non public transport schemes. My area has a transport scheme for those with impairments. Would that work? Or you can give Motability a call for help. You can find the number on their website.

https://www.motability.co.uk

What benefits have you applied for?

The one that comes to mind here is PIP. Citizen’s Advice is a good source of information on all things benefits. Here is the benefits section of their site at Benefits - Citizens Advice or you can contact them asking to talk with a benefit advisor.

Hiiya,
Thanks for your reply
Carers assessment is in the pipeline and husband has now requested a needs assessment. Benefits already recieving thankfully and, surprisingly, came through extremely quickly. CHC - yes, I’ve done a lot of work around CHC and attended meetinsg and assessments for people I have been advocating for. Although I now appreciate it is VERY different when it is for the person you love xxx

[Melanie_1910]

Hello, Fellow MND Carer

I care for my Gran, who was diagnosed with MND in March this year (though displayed symptoms for a year before that).
It is so hard, not just for the MND sufferer, but for their ‘main’ carer, too. You absolutely have to take care of your emotional wellbeing so the carer’s assessment being done will certainly help you with that.
I know exactly how you feel RE the treatment of the daughter vs the treatment of yourself. I used to feel so resentful that my Gran would put on a smile and spend time talking (when she could talk properly) to other family members about ‘normal’ things, whereas I would get barked at to do this or clean that or move this there or bring this here. I felt like a little slave at one point, if I’m being brutally honest. The thing to realise is that your husband treats you differently because he thinks you can handle it the best out of everyone else- he will be thinking his daughter won’t be able to cope as well, emotionally, as you. It’s like a backhanded compliment, in a way! You must tell him how you feel, though- if you don’t, it will eat away at you until all you feel is resentment (and who needs that on top of all MND has to bring to the table?)

It’s a good thing that you work for the MND charity (MND Association, by any chance?) as you will know what to prepare for, when the next ‘dip’ in the disease occurs (as you’ll know, playing catch-up with this disease is worse than being overly prepared for the ‘next stage’). Is your husband on board with this? Reason I ask is because my Gran was always 2 steps behind the disease progression (basically in denial that her legs were on their way out and in denial that her swallowing was starting to fail her- which has now resulted in the palliative team confirming she’s left it too late to have the PEG fitted).
One thing I will say is this: if you can book some time off work for yourself, do it. Do not tell anyone you have booked the time off (especially your husband). You will feel guilty to start with, but you need this time to yourself. Go and get your hair cut- you absolutely deserve it! (You could say you called a mobile hairdresser into work during your lunch break, if you need to!) Honestly, I was about ready to throw in the towel- I was emotionally exhausted, depressed, had zero hope, complete disregard for my own health and wellbeing because I thought ‘what’s the point?’. In the end, I just threw caution to the wind and realised that I was saving my annual leave days for potential hospital visits (and what would I actually be able to help with if I rushed to the hospital from work if she had pneumonia? Absolutely nothing.)- so I decided to take some days for myself. It’s the best thing I could have done. It finally gave me chance to process the diagnosis and it gave me a chance to ‘see through the fog’. I’ve felt more in control, calmer and been a better carer for my Gran ever since that break.

I wonder if you’ve been put on the waiting list for the MND Palliative Therapy? If you’re not, please ask for it. It’s so, so helpful to be able to vent/cry/rage/moan/whinge to someone who has seen it all before (and someone who won’t judge you for the things you say!)

As a final note (as I realise I’ve rambled on for quite some time now! Oops!), please do feel free to PM me whenever you like- it’s rare to find another MND Carer on this forum and sometimes you really do just need to talk to someone who truly understands what it’s like to live with it day-to-day.

I wish you and your husband the best <3

Hello back fellow MND Carer
Yes, I work for the MND Association. It’s quite strange working for people affected and living with MND and now being one of those people. The practice is VERY different from the theory. I’ve also done a lot of work with carers support services and carers centres and again. the practice of caring 24/7 is very different from the theory.

We are attached to the local hospital MND Care Centre which is really helpful and are due to see the palliative care consultant and respiratory consultant in a couple of weeks. After this weekend hubby is definitely at the stage where MND has hit squarely in the eyes (me too) and we’ve spent many emotional hours talking about the condition and how quickly it has deteriorated. Having his daughter visit has meant he has had to face the disease and what it has so far done in such a short space of time. He’s starting to discuss leaving a will and we will be having end of life care conversations with the palliative care consultant.

Today has been a very difficult day, me and my husband usually pick each other up and hate to see the other upset. We’ve kind of took it in turns to cry! But I suppost it’s much needed. We have a number of professionals visiting this week and husband has now said that he needs to have carers coming in to support him and give me a break so we’ll be getting this ball rolling tomorrow.

I’m pretty wrung out today as I realise my lovely husband is fading away quite quickly. However, thank you (and everyone else!) for the kind replies.

Best wishes,
Melanie

[thara_1910]

Hello, Fellow MND Carer

I care for my Gran, who was diagnosed with MND in March this year (though displayed symptoms for a year before that).
It is so hard, not just for the MND sufferer, but for their ‘main’ carer, too. You absolutely have to take care of your emotional wellbeing so the carer’s assessment being done will certainly help you with that.
I know exactly how you feel RE the treatment of the daughter vs the treatment of yourself. I used to feel so resentful that my Gran would put on a smile and spend time talking (when she could talk properly) to other family members about ‘normal’ things, whereas I would get barked at to do this or clean that or move this there or bring this here. I felt like a little slave at one point, if I’m being brutally honest. The thing to realise is that your husband treats you differently because he thinks you can handle it the best out of everyone else- he will be thinking his daughter won’t be able to cope as well, emotionally, as you. It’s like a backhanded compliment, in a way! You must tell him how you feel, though- if you don’t, it will eat away at you until all you feel is resentment (and who needs that on top of all MND has to bring to the table?)

It’s a good thing that you work for the MND charity (MND Association, by any chance?) as you will know what to prepare for, when the next ‘dip’ in the disease occurs (as you’ll know, playing catch-up with this disease is worse than being overly prepared for the ‘next stage’). Is your husband on board with this? Reason I ask is because my Gran was always 2 steps behind the disease progression (basically in denial that her legs were on their way out and in denial that her swallowing was starting to fail her- which has now resulted in the palliative team confirming she’s left it too late to have the PEG fitted).
One thing I will say is this: if you can book some time off work for yourself, do it. Do not tell anyone you have booked the time off (especially your husband). You will feel guilty to start with, but you need this time to yourself. Go and get your hair cut- you absolutely deserve it! (You could say you called a mobile hairdresser into work during your lunch break, if you need to!) Honestly, I was about ready to throw in the towel- I was emotionally exhausted, depressed, had zero hope, complete disregard for my own health and wellbeing because I thought ‘what’s the point?’. In the end, I just threw caution to the wind and realised that I was saving my annual leave days for potential hospital visits (and what would I actually be able to help with if I rushed to the hospital from work if she had pneumonia? Absolutely nothing.)- so I decided to take some days for myself. It’s the best thing I could have done. It finally gave me chance to process the diagnosis and it gave me a chance to ‘see through the fog’. I’ve felt more in control, calmer and been a better carer for my Gran ever since that break.

I wonder if you’ve been put on the waiting list for the MND Palliative Therapy? If you’re not, please ask for it. It’s so, so helpful to be able to vent/cry/rage/moan/whinge to someone who has seen it all before (and someone who won’t judge you for the things you say!)

As a final note (as I realise I’ve rambled on for quite some time now! Oops!), please do feel free to PM me whenever you like- it’s rare to find another MND Carer on this forum and sometimes you really do just need to talk to someone who truly understands what it’s like to live with it day-to-day.

I wish you and your husband the best <3

Hello back fellow MND Carer
Yes, I work for the MND Association. It’s quite strange working for people affected and living with MND and now being one of those people. The practice is VERY different from the theory. I’ve also done a lot of work with carers support services and carers centres and again. the practice of caring 24/7 is very different from the theory.

We are attached to the local hospital MND Care Centre which is really helpful and are due to see the palliative care consultant and respiratory consultant in a couple of weeks. After this weekend hubby is definitely at the stage where MND has hit squarely in the eyes (me too) and we’ve spent many emotional hours talking about the condition and how quickly it has deteriorated. Having his daughter visit has meant he has had to face the disease and what it has so far done in such a short space of time. He’s starting to discuss leaving a will and we will be having end of life care conversations with the palliative care consultant.

Today has been a very difficult day, me and my husband usually pick each other up and hate to see the other upset. We’ve kind of took it in turns to cry! But I suppost it’s much needed. We have a number of professionals visiting this week and husband has now said that he needs to have carers coming in to support him and give me a break so we’ll be getting this ball rolling tomorrow.

I’m pretty wrung out today as I realise my lovely husband is fading away quite quickly. However, thank you (and everyone else!) for the kind replies.

Best wishes,
Melanie

Good luck! Let us know what happens next over the next few weeks.

[Pet66]

Hi Melanie
Sending you ((( hugs)))
I lost my lovely husband in May to Dementia and other health issues. I take some comfort in the fact he didn’t know he had dementia, or even at times that he didnt remember he had been so poorly which he had. MND sufferers know ( as you are more than well aware) . Must be even worse for you both.