Long post with question about tube feeding from a newbie

[Jstbcs]

Hi!

I don't know why it took me so long to find this site, but it's a wonderful community.

I would like to ask for your help and opinion. It will be long, I'm sorry in advance.

My mother was diagnosed with Parkinson's at the end of 2018, aged 63. She very soon developed a severe scoliosis out of the blue, which had to be operated 4 times + she has osteoporosis and arthritis. My mom's mobility continuously deteriorated from the beginning and by the summer of 2019 she was only able to move at home with a walker, and after the surgeries 1-2 years later, she wasn't mobile and self-sufficient again (and the anaesthesia made the Parkinson's symptoms worse). The doctors (spine surgeon, neurologist) were pointing fingers at each other for the problems.

Later it became clear that it's some kind of Parkinson's plus syndrome, which the neurologist called MSA two years ago for the first time, but it wasn't the first and only guess so we didn't take it for granted. And we thought it didn't matter which nightmare it was, as long as none of them were curable... We was never really informed about MSA, only briefly, complex support background doesn't exist for MSA patients where I live. I am honestly glad that some people have it in other countries.

I take care of here at home. In the last few weeks her condition has deteriorated drastically, at a faster pace than usual. She used to spend long hours in a wheelchair, now she is mainly in bed instead. She is sleeping more, but not always. Her speech has been slurred for a long time but now, I've been having a hard time understanding what she wants to say. I'll figure it out sooner or later, but only because I know her.

The most worrying thing is that she has been swallowing with difficulty for a long time, and in the last few weeks it became worse, she eats and drinks less and less, close to nothing and the food often goes the wrong way, after which she breathes noisily for a long time.

I live in the capital of a central European country, not the middle of nowhere but the health care is horrible here. I don't want to send her into hospital because it would be extremely hard on her physically and psychologically, and she will never come out of there, not with this level of illness. The doctors didn't tell me anything about things like tube feeding at home, or that the peg should have been put in a long time ago, but this site is also where I first encountered the concept of liquid thickeners.

They just want me to send her into hospital, so it won't be their responsibility. We reached a point where the neurologist doesn't know about anything, it's not Parkinson she says and some of hers are not even neurological symptoms.... like thick saliva, difficulty swallowing, muscle tension in the legs... as several people have mentioned here, unfortunately I could educate them on the subject. If they wanted to. She said they will tube feed her at the hospital, but according to her (who hasn't seen my mom face to face in a long time) "we're not there yet". I asked her what if she doesn't want tube feeding, and if she does, when will we get there, since she can't swallow! (I called her because my mom wanted to stop taking Madopar, it's hard to swallow.) I never got an answer.

I asked the GP for help today, to visit her, check my mom's condition, listen to her lungs, suggest further care and feeding at home, what kind of infusion she can have, what options are there for feeding her at home... He told me that he could help us to send her to the hospital. I told him that I would like to take care of her at home, his answer: there is no possibility of tube feeding at home and there is no point to give her infusion if she can't eat.

What????? I know it's possible and the GP can order it! He told me that let him know if he can help us anything else. I still can't believe it!

Due to strong pressure, she was given a simple sodium chloride infusion for 5 days (!) a month ago, but no more, plus due to the high rheumatism factor she got 3 new pills per day, the main pill being steroids. I have to make her swallow those every day... It's insane. Zero aftercare.

I don't know what my question is... I am aware of how this disease ends. But she watches TV at home, kind of enjoys her favorite shows, she's in her own home and bed, I'm with her, I help her when she needs it, and she needs it often. In the hospital no one would go and help whenever she calls them, and they would not understand what she wants. There is no capacity to really deal with a patient's needs on this level, it's experience.

I don't know what to do. I don't want to torture her, she suffers enough as it is. But now most of the suffering is due to swallowing, yet I push her because what else can I do??

The GP said a check-up during a hospitalisation should be a minimum, but he didn't say that what he needs for ordering the tube feeding at home afterwards. He obviously hopes she won't be his responsibility.

I guess my question is what is needed to start a tube feeding? I suppose a peg is no longer an option for us, but a nasal one maybe... What tests have to be done beforehand??

Maybe I should try the hospice service? The GP didn't offer that either.

I started to talk to my mom about this, but she's not that strong woman she used to be, I'm not sure she will have a strong opinion on this and it's really hard to "push" her any direction in this case...

Thanks for any feedback, I really appreciate you reading this long post.

Mynona

[Yanno]

Hello Mynona, I’m so sorry for your situation. Your long and heartfelt explanation of your mums condition needs a longer response however I am at a loss what to suggest.

I believe nasal feeding isn’t usually done at home here in the UK either and my experience of pegs is it’s too late to fit one now - others may comment on this.

I would definitely contact a hospice if you have one close by. They are skilled in these things and would be better able to advise.

Some may have a different view but having recently lost my wife to this dreadful condition, I would prioritise having time with you mum over everything else. Sadly you know where this is going to end and I treasured the time I had with my wife 24 hours a day leading up to that point.

I hope you get some help,

Take care, Ian

[Jstbcs in reply to Yanno]

Thank you so much for your kind reply and for taking the time to read this long post. It means a lot to me. I won't be able to keep her at home and it's devastating. But if she's just suffering here and I can't help her, there's no point.

I'm so sorry for your loss. I wish you all the best!

[Anovis]

If Hospice is available, I strongly encourage you to have her evaluated if one of your goals is to keep your Mom out of the hospital. My husband has this goal and started Hospice a couple of months ago. It's very difficult to predict time to death with neurologic disease but his primary care and movement disorder doctors both agreed that Hospice would be the best care for him. So far, it has been exactly what we needed. I think most of us can relate to your frustrations and desperate need for help. This forum is a good place to start.

[Paul_and_Sue_Wood]

Hi

Sorry to hear your story and where you are now.

As you've found this condition is not widely known about and therefore getting the best care is difficult and that's not just by country but even by each city or town no matter what country you are in.

I am sure your mother is grateful with everything you have done so far and you will continue to do so as you move on.

Caring for a sufferer of MSA is all about reducing risks and understanding where those risks are and one of the major risks is infections from swallowing difficulty. This is often helped with a PEG feed system but as you've found out they are now easy to get fitted as the person needs to be strong and sooner rather than later. My Sue had one near 5 years ago and she is still telling me off..

My thoughts are that you both need to be as comfortable as you can and finding a hospice to help you may be the best route at this stage.

Good luck on the last part of the journey and we are all here to answer any questions and support any way we can.

Paul & Sue.

[Gallowglass]

God bless you and your mom. This is very difficult. I know this will happen to me, as it happened to my dad and my uncle. They both died of choking on food or bodily fluids. They had both turned down the feeding tube. They had both been hospitalized for a few weeks. I will also turn it down. I do not want my suffering prolonged. My advice is give her the facts and let her choose. That takes the weight off of you! Sadly despite having many visitors, both my dad and my uncle died when family was not present. But that would have been their preference. They would not want loved ones to be distressed. The nursing staff was kind and caring and handled it well. My faith gives me hope that they are now in a better place with God always present and loving.

[KittyWithers]

sorry to hear this journey. I used to work with the tube-feeding team as a dietitian here in the UK ((Nottingham). All types of tube feeding can be done at home (NG or Peg/ Button) but it isn’t always the best decision for an individual. Here we have access to Speech and Language Therapists who would do a swallow assessment, they could then offer advice on the safest consistency of food/ drink. If a swallow is unsafe they may suggest a feeding tube but this is always done as a team decision. If someone is nearing the end of their life it may be nicer for them to continue eating even if it does cause issues. An NG tube can be uncomfortable and may be pulled out which means the carer or health professional would need to put it back (in the UK carers can be trained for this). A PEG or gastroscope button needs anaesthesia which may be too traumatic for some. The majority of feed companies do a home delivery service for feed and accessories. I hope you find the support needed, and please feel free to ask questions.

[SamanthaMSAT Moderator Staff]

Hi Jstbcs,

I am sorry to hear that you aren't getting any support for your Mum.

We have a Peg (tube) feeding factsheet which might answer some of your questions as well as some other info which should be helpful:

msatrust.org.uk/support-for...

Kind regards,

Samantha MSAT nurse specialist.

[mandg]

Hello Mynona,

That was very hard to read for me. I lost my husband recently and tube feeding was an issue.

I wont go into a long explanation but due to his choking and lack of food being taken, I asked if tube feeding could be done, but this procedure was very distressing for Graham so was not pursued, by this time it was too late for a Peg. (This situation arose very rapidly, and if I had known we would have looked into fitting a PEG much sooner). As there was nothing the hospital could offer, I brought him home, and cared for him over the last few days myself. It was very hard seeing someone not being able to sustain themselves with food or liquid,

My thoughts are with you, spend time with your Mum and savour every moment.