PDA

View Full Version : No To Peg and No To NIV



Broostine93
2nd May 2019, 10:48
Hi All,

I attended the first MND clinic multi-disciplinary meeting with my Gran yesterday to check her over and see what her progression is like etc.
Unfortunately, the neurologist said it's the fastest-progressing case of MND he's ever seen, so that's not good news, but we've been told the breathing hasn't become problematic just yet. The second leg is now starting to become affected (can't wiggle toes and muscles becoming stiff), so walking is going to be impossible soon (bearing in mind we only got a diagnosis in March and, at that point, she only had drop foot in the one leg, with the tiniest bit of swallowing/dribbling so we've now progressed to near-full paralysis in the left leg and the right leg repeating the same pattern, plus now the coughing/spluttering/dribbling/very slurred speech in the space of a month and a half).
The speech and language therapist is going to get in touch soon because swallowing and talking are now becoming difficult/tiring for my Gran.
Yesterday was the first time PEG was mentioned to my Gran by the professionals (I've read up all about it so understood what it entailed beforehand). I knew she was going to refuse it, but it was still quite a lot to take in when she said as much out loud. She also said that she doesn't want anything to help her breathe (so, no NIV, either).

I understand why she doesn't want them- to use her words 'I don't want to drag it out'. It's an incredibly brave decision to have made and one that only she could have made for herself, but I am now terrified about how and when the 'end' is going to come. When she becomes unable to eat, I am worried she is going to either starve or choke- am I meant to just watch this happen without being able to do anything about it?

I am just wondering if anyone else has made this decision or known someone who has made this decision before? I really just want to know what to expect so I can be as prepared as possible so I can be the strongest support that I can be to my Gran.

Thank you all (and also sorry if I have posted this in the wrong forum- I wasn't overly sure where to post!)

Gillette
2nd May 2019, 11:55
Hi Broostine93,

I'm so sorry that your Gran has MND and that it is progressing so quickly. It is such a lot for you both to cope with.

I can completely understand your Gran's decisions concerning a PEG feed and NIV and your worries about what those decisions will mean. Up until a couple of weeks ago, I had made the same choices as my MND has been progressing fairly rapidly.

Does your Gran have access to a specialist MND nurse, or a palliative care nurse? If so, it would probably be worth talking to the nurse about your worries concerning how those decisions will affect your Gran and how she copes with the disease. If your Gran does not have access to the nurses, ask her GP for an urgent referral. There should be plenty of support available from health professionals. This forum is also a very supportive environment, so do ask questions.

Wishing strength and courage for you and your Gran.

Ellie
2nd May 2019, 12:10
Hi Chrissie,

Firstly I'll say please don't have those awful images in your head of your Gran's future - with proper palliative care, that's not what happens. Medication is given to relieve both physical hunger pains and for air hunger, so the person won't suffer distress.

The SLT will show Gran the safest way to eat and drink whilst she can - swallowing with her chin tucked down, food consistency changes, fully concentrating on eating (no chat) etc. The SLT will also advise on speech/communication aids.

If your Gran isn't yet linked into a hospice, now is the time to do it and start building a relationship with them. Many hospices offer community care, 'Hospice at Home', and your Gran could attend Day Hospice (1 day per week) for nursing, physiotherapy, OT and complementary therapy services.

Re progression: because your Gran had symptoms for a year prior to diagnosis, quite a large proportion of motor neuron damage had ocurred by time of her actual diagnosis. Nearby muscles can only compensate for so long before also failing to function. Unfortunately elderly people do seem to progress fast, or faster, than younger people...

Your Gran is certainly not alone in declining feeding tube or NIV and for the same reason.

Please do get in touch with her hospice - they are great places and offer support to family members too.

Big hug to you Chrissie.

Love Ellie.

Kayleigh
2nd May 2019, 13:01
Dear Chrissie,

I'm sorry about your Gran becoming very unwell so quickly.

It's such a personal decision about whether we decide to accept interventions such as a feeding tube - but, whatever we decide, we should not be left alone by healthcare professionals to deal with everything. There should be ongoing support for us and our family, from our local hospice and other professionals such as an MND nurse and our GP.

Most hospices have their own website and there is also information on the Hospice UK website:-
https://www.hospiceuk.org/about-hospice-care/find-a-hospice

A referral to a hospice shouldn't take very long and can usually be done by a GP or someone else like an MND nurse. Even if your Gran hasn't been referred yet, I'm sure the people at your local hospice won't mind if you phone them to talk things through and to ask what particular support they can offer you and your Gran.

You are such a wonderful granddaughter, devotIng so much time and energy into looking after your Gran and making sure that she gets all the care she needs. I hope you have peace of mind that you are doing every thing possible for your Gran to make her life as comfortable as possible.

It can't be an easy time for you, I hope you have support from family and friends as well.

Thinking of you,
Love Kayleigh xx

Broostine93
2nd May 2019, 13:04
Hi Gillette,

It was explained to us yesterday that the OT/Physio Team are a replacement for the MND Team in our area of the country- in fairness, they have been brilliant at supporting us.

Hi Ellie,

Thank you for putting my mind at ease- it was something I was horrified at the prospect of. We were at the MND clinic at Myton Hospice yesterday for the multi-disciplinary meeting, but this is the first and only contact we've had. Day Hospice was offered/suggested and my Gran turned it down- she doesn't seem to want any complimentary therapies, either (she's a stubborn woman!)

Thank you both :)

Broostine93
2nd May 2019, 13:06
Thank you Kayleigh- very kind words and so greatly appreciated :)

I do think we've got the support available to us- it just seems my Gran is unwilling to reach out for it, preferring to 'go it alone' as much as possible (as has always been her nature, unfortunately).

Kayleigh
2nd May 2019, 17:21
Dear Chrissie,

I can understand your Gran's reluctance to accept help, because letting go of our independence is not always easy to come to terms with.

It sounds like your Gran is probably quite a private person - and so being fussed over and looked after by strangers might make her feel anxious and uncomfortable (and I do empathise with her!).

Visiting a hospice for complementary therapies etc is not everyone's cup of tea - but perhaps your Gran might warm to the idea of some support at home, if the hospice offers it.

Perhaps a nurse will be able to have a short visit with you and your Gran at home - so that she can get to know someone from the Hospice while being in her own environment.

Although I don't always find it easy to accept help, the hospice nurses always put me at ease because they are very kind and they have an understanding of what I am going through.

Even if your Gran doesn't want support from the Hospice, hopefully you will be able to get support and advice from them. I have been given the telephone number of the nurses at my local Hospice, which is very re-assuring for me and my family as we can get advice from a palliative care nurse quickly, if we need it.

Its good to hear that your Gran has a very good physio and OT.

Love Kayleigh x

Lynne K
2nd May 2019, 18:41
Dear Chrissie,

I'm sorry about your Gran becoming very unwell so quickly.

It's such a personal decision about whether we decide to accept interventions such as a feeding tube - but, whatever we decide, we should not be left alone by healthcare professionals to deal with everything. There should be ongoing support for us and our family, from our local hospice and other professionals such as an MND nurse and our GP.

Most hospices have their own website and there is also information on the Hospice UK website:-
https://www.hospiceuk.org/about-hospice-care/find-a-hospice

A referral to a hospice shouldn't take very long and can usually be done by a GP or someone else like an MND nurse. Even if your Gran hasn't been referred yet, I'm sure the people at your local hospice won't mind if you phone them to talk things through and to ask what particular support they can offer you and your Gran.

You are such a wonderful granddaughter, devotIng so much time and energy into looking after your Gran and making sure that she gets all the care she needs. I hope you have peace of mind that you are doing every thing possible for your Gran to make her life as comfortable as possible.

It can't be an easy time for you, I hope you have support from family and friends as well.

Thinking of you,
Love Kayleigh xx
Hi Broostine93. I'm really sorry about your grans MND progression and your worry. I cannot offer better advice Than Kayleigh and Ellie have already given. You are so special to care so wonderfully for your gran. The only thing that I can add and I know that it won't be easy and you might be doing this already: treasure every moment while you can and try to have laughs together when you can. I send you electronic hugs. Take care of yourself. Lynne x

shrew
2nd May 2019, 20:23
hi Broostine93. sorry to hear of your Grans decline x

Broostine93
3rd May 2019, 09:22
Hi guys,

Thank you for all of your advice :)

Kayleigh- I think she's more 'fed up of loads of people coming in' to her house all the time. I think she's so used to living alone and having her own space to herself that, though she needs the help physically, she'd rather not have to deal with people. It's just one of those things that's been thrust upon her so quickly so there's not been much time to adjust (personally, I think it's brilliant that everyone has been around and gotten things done so quickly, as I know many have a long time to wait for things to be put into place, so I'm thankful for that).

Lynne- I am certainly trying to make some memories, though I am finding it difficult to do it when there's so much running around/housework/etc. to be done every day. We are getting quite snappy and shouty with each other sometimes, but we're resolving arguments quickly and I actually think it's healthy that we're venting our frustrations out and then talking about it all when we've calmed down. Unfortunately, it seems that all the other family members are getting all the laughs and I'm getting the sadness/anger/frustration that's left over (though, I know that this is only because my Gran is so close to me that she feels she can be completely herself, so it's kind of a good thing, in a weird way!)

Shrew- Thank you for having us in your thoughts- it's very kind of you :)

nunhead_man
3rd May 2019, 10:27
Hi Broostine93

I am sorry to hear about how your grandmother is progressing - and I am impressed by your perception of your circumstances.

It has made me think about the difference between a relatively slow and a relatively fast decline and perhaps it is in that very urgency that you can find some space to make some memories with your grandmother.

I am a digital tourist rather than a digital native so I wonder practically what those memories might look like - a bit of Youtube video, some images stored in local storage - of some people doing something that is in some way typical and evokes other memories?

Warmly

Andy

Ellie
3rd May 2019, 11:54
You're spot on Chrissie - those we love the most are the ones we hurt the most :(:(:( It shouldn't be that way, but it is... Sometimes it's to cover the shame that we need help or even the perverse notion that pushing our loved ones away will mean they won't miss us so much when we're gone...

Your Gran is so very lucky to have you in her life.

Hope your fiance is there for you and it's important to get time with him too.

Love Ellie.

Broostine93
3rd May 2019, 12:36
Hi Andy,

I have a tendency to over-analyse people's behaviour so I can see why people do the things they do and say the things they say, regardless of the situation :) I suppose it's quite a good thing in this case!
Yeah, I mean we are having some laughs at some situations (mostly to do with the clumsiness associated with the disease itself), but it's all contributing to quite warm memories that are being made in a bad situation. I do have some old home videos with my Gran on and, honestly, I think making any photo/video memories of her now would upset her as she's given up with her appearance in many ways.

Thank you kindly for taking the time to reply to my post :D

Broostine93
3rd May 2019, 12:45
Hi Ellie,

I think you're absolutely right. Guilt and shame are such driving factors in how we treat those around us and, of course, those feelings will be stronger when you have a closer relationship with someone.
To put some perspective on it- I think my Gran and I are much closer than your 'typical' grandparent/grandchild relationship because she's sort of 'replaced' my parents throughout my life. Unfortunately, my Mum was a drinker and quite a violent one at that- both my Gran and I went through the same experiences with my Mum (trying to help her/nursing her through withdrawal/being 'normal' with her when she wasn't drinking and was back to her old self etc.) Mum unexpectedly died Aug 2017 and that experience brought Gran and I closer still. So really, we're both still grieving whilst we're going through this MND nightmare, so I dare say some of that grief is still coming out in both of us, hence our rather more frequent outbursts than you'd expect under more 'normal' circumstances.
(Apologies for the long reply, by the way! I don't quite know how I managed to write so much- just went off on one then!)

My fiance has been brilliant- we're trying to take some time together when we can, but he understands the way things are and knows that we will have 'our time' at some point in the future. He assures me he's 'not going anywhere' :)

Deb
3rd May 2019, 15:38
Hi Chrissie,

You are doing an amazing job and your Gran is so lucky fo have you to love and support her.
Your fiance sounds brilliant too .. no more than you deserve !

No magic words unfortunately at this incredibly difficult time but I am thinking of you.
Love Debbie x

Broostine93
7th May 2019, 10:04
Thank you, Debbie :)
I sometimes don't feel like my Gran feels so lucky to have me around- I feel very taken for granted recently, I must admit x

Gillette
7th May 2019, 10:53
Thank you, Debbie :)
I sometimes don't feel like my Gran feels so lucky to have me around- I feel very taken for granted recently, I must admit x

Hi Broostine93 / Chrissie,

I can understand you feeling that you are being taken for granted. Please, don't forget that it tends to be those we love the most and whom we know we can rely on that we take mostly for granted. Your Gran knows how much you love her and that you would do anything for her and she feels safe in that knowledge. Her taking you for granted is an indication of the strong bond between you. Sending hugs to you both.

Broostine93
7th May 2019, 14:20
Hi Broostine93 / Chrissie,

I can understand you feeling that you are being taken for granted. Please, don't forget that it tends to be those we love the most and whom we know we can rely on that we take mostly for granted. Your Gran knows how much you love her and that you would do anything for her and she feels safe in that knowledge. Her taking you for granted is an indication of the strong bond between you. Sending hugs to you both.

Hi Gillette/Dina,

I think it's a bit more than that. For example, I was round to do a few mini-jobs and wait in for the fire department to come round and fit a new fire alarm (requirement of social services, apparently) the other day and, I thought 'I'll stick a film on- it'll take her mind off things and we'll be doing something we used to do all the time, before all of this so it'll be nice'. They turned up about 30 minutes in to the film, did their thing and then left. Immediately, she says 'okay, you can go home now' so I'm there thinking 'hmm, maybe she's feeling bad that I've had to sit in waiting with her'. So, I decided to stay and finish watching the rest of the film, just to spend some 'normal' time together. She made a point of being fidgety in her chair like she was uncomfortable and looked like she hated every minute of the film, got me to do random jobs for her while the film was still on so my attempt to just sit and spend some time together was absolutely wasted. It's things like that that are really starting to annoy me, along with comments like 'i told the carer that the house isn't as clean as it used to be' when I am absolutely killing myself trying to keep her house clean and as tidy as possible every single day (whilst ignoring the housework in my own bloody house!) Another one, from yesterday- she'd seen her old next door neighbour's daughter for the first time since being diagnosed and Gran says 'she said she'd cook me a proper dinner and bring it over'. I said, 'that's so lovely. I would do that myself for you, but I really don't have the time to cook like that'. Response 'you don't cook anyway'. My response 'Not anymore because I don't have the time. I used to, though'. Silence. I took it like 'well, you do everything else for me. Why not cook as well?' (Sorry, this turned into a much bigger rant than I'd originally intended!)
I would absolutely love a simple 'don't come round just for one day tomorrow. I have a phone and I will call you if there's anything urgent. I will be fine as I have 4 carers a day as it is, plus a personal alarm in case of emergency. Go and spend some time doing the things that you need/want to do for a change'. Considering there are 4 carers a day, I really don't see why I need to be there every single day :( Sorry, I am having a really tough time adjusting to this new prison-like life of guilt :(

Lynne K
7th May 2019, 15:50
Hi Chrissie. It sounds to me like your gran may be struggling with her change from being the older wiser care giving one to be her that is needy. She may not know how to 'be' with her loving granddaughter, you. It must be really hard for you. How's she been in the past when there's something or other that needs sorting between you? What would happen if you told her sensitively how you feel? Do you think that she'd listen and sort it out with you or take off on you? I know how it is to feel that you are treading on glass. Good luck, Lynne x

Music man's wife
8th May 2019, 00:15
Difficult situation Chrissie, maybe Grandma is being critical as its her only way of keeping control of a situation that's out of her control.
Everybody reacts in different ways, our daughter has barely been near her Dad since his diagnosis and won't speak to me anymore.

Regarding refusing treatment my husband has won't have a PEG. It's even written down in his ADRT. He just won't entertain the thought. I don't like it but it's his decision.

Keep up the good work! X

Broostine93
8th May 2019, 09:24
Hi Chrissie. It sounds to me like your gran may be struggling with her change from being the older wiser care giving one to be her that is needy. She may not know how to 'be' with her loving granddaughter, you. It must be really hard for you. How's she been in the past when there's something or other that needs sorting between you? What would happen if you told her sensitively how you feel? Do you think that she'd listen and sort it out with you or take off on you? I know how it is to feel that you are treading on glass. Good luck, Lynne x

Hi Lynne,

When we were going through the long process of hospital appointments/GP visits etc. to try and find out why my Gran's foot wasn't 'working' correctly, she actually flipped out at me when I was trying to offer solutions/quicker diagnosis. She screamed at me to leave her house, threatened to call the police on me for not leaving (I just went in the kitchen to see if she'd calm down at this point), she called me all sorts of names etc. It terrified me, upset me to the point I went home in tears and I didn't see her for three days because I was afraid of her reaction to see me again. Funnily enough, the next time I saw her was the night we ended up in A&E because her symptoms had escalated, causing dizziness/drooling/affecting the leg more, so, in a weird way, it kind of got us to where we needed to be.
Having said that, I really don't want to go through another bout of that to get to where we need to be now (I have a real problem with arguments/shouting, more than most people, and I avoid conflict at all costs) x

Broostine93
8th May 2019, 09:26
Difficult situation Chrissie, maybe Grandma is being critical as its her only way of keeping control of a situation that's out of her control.
Everybody reacts in different ways, our daughter has barely been near her Dad since his diagnosis and won't speak to me anymore.

Regarding refusing treatment my husband has won't have a PEG. It's even written down in his ADRT. He just won't entertain the thought. I don't like it but it's his decision.

Keep up the good work! X

Hi MMW,

I think you're right- I also think she's feeling guilty about me having to look after her (though, clearly not that guilty or she'd take me up on my suggestion to get a full-time carer at the very least).
I can see why your daughter has reacted the way that she has- this diagnosis has the ability to scare most people away, though I am terribly sorry that your husband and yourself have the loss of seeing your daughter on top of everything else. The world is cruel sometimes x

Deb
8th May 2019, 10:32
Hi Chrissie,

I am very sorry for your impossible situation. I really appreciate how hard and frustrating it must be for your Gran to accept help from carers and health professionals.

However, you must look after yourself and have some "me time " . You need time to relax with your partner too. You shouldn't feel guilty because taking care of yourself will benefit your Gran too .

Your Gran is lucky to have you in her life.
Love and hugs,
Debbiex

Lynne K
8th May 2019, 11:24
Hi Chrissie, I'm very similar to you I think in not wanting strife and not able to take part in shouting matches. I would have been really upset to be spoken to how you described. My heart goes out to you. I'm off out to the MND Clinic now but will message again later. Lynne x

Broostine93
8th May 2019, 12:04
Thank you, Debbie- I am trying to tell myself to spend some time with my partner, but I don't half get guilt-tripped for it after I've done it.

Lynne- Good luck at the clinic. I hope you get on okay :)

Lynne K
8th May 2019, 12:31
Thanks Chrissie. Just arrived. Always long time consuming queue to get into Salford Royal, then another similar queue to park. But we always leave lots of time. I'm in the foyer now and hubby gone to park after wheeling me here from the drop off point. Appointment 1pm. Lynne x

Gillette
8th May 2019, 12:39
Thanks Chrissie. Just arrived. Always long time consuming queue to get into Salford Royal, then another similar queue to park. But we always leave lots of time. I'm in the foyer now and hubby gone to park after wheeling me here from the drop off point. Appointment 1pm. Lynne x

Good luck at the clinic, Lynne.

Kayleigh
8th May 2019, 12:44
I hope all goes well at your appointment Lynne. Kayleigh x

Lynne K
8th May 2019, 15:44
Appointment went OK thanks Kayleigh. All tests slightly different results but Miss A Chaouch Neurologist was happy with them. She says that she thinks I'm doing very well, But she asked me about if I get enough sleep and was concerned about what I told her. I struggle to get enough sleep because of back and hip pain mostly. Other pain problems sometimes wake me. None are caused by MND but my back is getting worse because I'm not walking as I used to (I had to keep moving to keep my back in good shape). She's going to write to my GP to ask for something to be done ie tablets. She said getting enough sleep is very important. Can you remember which of the painkillers causes muscle weakness so that I can avoid it. Is it Baclofen that is safe for us to take? I can't remember the name of the other drug beginning with 'c.' Lynne

Ellie
8th May 2019, 15:54
Glad you're doing so well Lynne, MND-wise at least.

Yes, sleep really IS important, so hopefully your GP will sort out appropriate for your non-MND pain. Baclofem is an antispasmodic medication, rather than a painkiller - unless your muscle tone is quite high, it may not be suitable for you.

Hope you get that pain sorted out ASAP!

Love Ellie.

Kayleigh
8th May 2019, 16:08
Hi Lynne,

The painkiller you are thinking of that begins with 'c' might be codeine?

It's good to hear that your appointment went well. I hope that some painkillers will be effective and that they will help you to get a good night's sleep.

Love
Kayleigh x

Kayleigh
8th May 2019, 16:25
Baclofen is a muscle relaxant Lynne, but it doesn't sound like it would be prescribed for your back and hip pain anyway.

Baclofen is sometimes prescribed for muscle cramps (if quinine is not effective):-

https://www.mndassociation.org/forprofessionals/mndmanagement/pain/

Love Kayleigh xx

Lynne K
8th May 2019, 16:45
Thanks Kayleigh. It's just that my neurologist mentioned it. She first asked if I'd had amitriptyline for pain. I said that I had been prescribed a small dose of it years ago but I'd never take it again. It helped me to sleep but I was foggy headed for most of the following day. Then she suggested Baclofen I think.I asked if this was the drug that caused muscle weakness? She said it was another drug (beginning with a 'c' but was definitely not codeine, 'carb... ' something maybe) . But my memory suffers when I'm tired and I couldn't remember which of these two drugs gave muscle weakness after I got home. I wouldn't take codeine because of two things:, it causes constipation and after a while it has less effect. I've had it in the past. I've also had another similar drug that didn't cause constipation but increased the risk of falling. The risk of addiction with opiods such as these is high. I don't hold out much hope of a solution to my pain. Lynne

Lynne K
8th May 2019, 17:23
Thanks Ellie, Lynne x

Lynne K
8th May 2019, 17:26
Chrissie, I sent you a personal message. Sorry that I must have done something wrong as its gone to you twice. Lynne x

Kayleigh
8th May 2019, 18:03
Thanks Kayleigh. It's just that my neurologist mentioned it. She first asked if I'd had amitriptyline for pain. I said that I had been prescribed a small dose of it years ago but I'd never take it again. It helped me to sleep but I was foggy headed for most of the following day. Then she suggested Baclofen I think.I asked if this was the drug that caused muscle weakness? She said it was another drug (beginning with a 'c' but was definitely not codeine, 'carb... ' something maybe) . But my memory suffers when I'm tired and I couldn't remember which of these two drugs gave muscle weakness after I got home. I wouldn't take codeine because of two things:, it causes constipation and after a while it has less effect. I've had it in the past. I've also had another similar drug that didn't cause constipation but increased the risk of falling. The risk of addiction with opiods such as these is high. I don't hold out much hope of a solution to my pain. Lynne

Hi Lynne,

It sounds like she might be asking your GP to prescribe Baclofen then? - anyway I expect you will find out shorty, especially if she sends you a copy of the letter she sends to the GP.

Hopefully, whatever is prescribed will work well for you, because it can't be pleasant having to put up with on-going back pain.

Love Kayleigh x

Lynne K
8th May 2019, 21:30
Thanks Kayleigh. I always get copies of letters from my neurologist to my GP, well almost. The only one that I didn't get was around the time that I changed GP. Lynne x

Ellie
9th May 2019, 14:14
Hi Lynne,

If it is Baclofen you've been prescribed and, only if you want to, you can let us know before you start taking it - I take it, as do many others, and know it can take a few attempts to get the sweet spot dose of Baclofen. It's not ideal to jump right in at a high starting dose...

That's not to say I disagree with your doctor btw!!

Love Ellie.

bakeit Forum