Frustrating!

[mndireland]

Im not sure where to start, My mom has been waiting to go back into hospital for 4 weeks now, and still they are saying the hospital is overcrowded and so there is no available beds. This is extremely frustrating, as I have to call them almost everyday about one thing or another. Her ankles are completely swollen so she cant walk too well anymore, but the main problem is the choking and breathlessness.

She has been on bi pap since July and its ok, still getting used to it. Almost everyday now we have what I call a choking attack! These have been happening for quite some time now, probably about 9 months, but they are lasting a lot longer now, sometimes for up to 10 or 12 minutes, resulting in her panicking, face changing colour, really really scary! Ive told the neuro on so many occasions and now with the massive loss of weight they say they want her in to hospital. I was told by one nurse she might get fitted with a tube but then by another that her breathing was too bad, so whats the next step after that?
If she cant have the peg, whats next? She is choking on porridge and soup now? If she cant eat these then really what can I give her? Im so frustrated by the hospital, what if it is too late for peg, and why were we not told about this before, why did they not fit it sooner? I mean this is the first Ive ever heard of this desease, so I never knew about the peg etc, isnt this for the hospital to tell us about, arent these the things that the doctors should have warned or advised us about, shouldnt we have been given the option, instead now it is too late! Sorry, im just really so annoyed right now!
Any advice on foods are very very welcome.....

 

[Jennifer51]

frustrating

mndireland....how awful for you... have you joined the mnd assocition...just go to their website and join...no fee. They will send someone to see you. I contacted them as soon as I was diagnosed...they have been fantastic...I have been to an mnd funded clinic and they arrange things for you...long before they are needed. They have arranged my wheelchair, physio, speech therapy, occupational therapy. They have provided me with a loan riser chair and a loan lightwriter...they would also have arranged a loan stairlift, but they can only provide them if you have straight stairs. They arranged for me to see a gastro enterologist, to talk about the peg even though I am not in need of one yet, and hopefully not for ages....Please get in touch with them about your problems, they are magic at making things happen. I wish you luck...

 

[joelc]

It is not too late for a PEG or trache. If her breathing is too bad for a PEG right now then getting a tracheostomy and a PEG at the same time is the likely option. This not a bad thing and is easily done, but don't wait too long as the healthier she is the quicker the recovery.

The choking could be Post Nasel Drip - I had it for a long time and controlled it by drinking LOTS of water. I don't have that problem any more, thankfully!

 

[laurel]

Hi mndireland,
In Canada we often face waiting lengthy periods to get a hospital bed. When my mom was living with us and was deteriorating (not ALS) and she was wait listed for a hospital bed, the home care nurses said that the next time she had a shortness of breath episode I should just call the ambulance and get her taken to emergency. They felt this was the only way to get her into hospital in a timely manner. I did this, she was seen in the emergency room, and was in a medical bed by the afternoon. That might work for you as well.
Good luck and take care.
Laurel

 

[givenin]

There are protein drinks that she can have, Boost, Ensure, Milkshakes usings these drinks with icecream. Slow and small amounts with the chin tucked down when swallowing helps some. For her ankles if she can elevate them above her heart for awhile it helps along with massages. As for the peg there are other ways of doing the procedure and I am sorry I don't remember the name but it is another way of having it done that won't interfer with the muscels of the throat. We reserched it online and gave to the Doctor. We were also advised once that if we took my husband in through the Emergency then he would get the procedure done that way if he wanted it.

Others I am sure will give more solutions soon.

Take care

 

[BethU]

mndireland ... I'm so sorry your mom is going through this horrible experience. I absolutely agree that you should have been informed of these things long ago, before your mom reached this state!

About feeding: I am living mostly on shakes made with Ensure and ice cream and extra protein powder, mixed in a blender ... I make mine real thick ... and I find that to avoid choking, I have to take very small quantities, even just a teaspoon at a time. It takes a long time to eat, but it is better to be safe not sorry!

As givin said, swallowing with your head in the "chin tuck" is a safer way to go. In this, you bend your head down like you are praying. This shortens the distance the food or liquids have to travel.

I'm praying for you both, for your mother to get the procedures and relief she needs, and strength for you.

 

[mndireland]

Thank you everybody for your help. The other night my mam fell, she sometimes sits on the edge of her bed as she hates to lie down because of her breathing, It was during the night about 5.00am, and I heard a thump, I ran in and found her face down on the hard wood floors, her face was bruised. Eventually I had lifted her back into bed, (im only small ha and my mom is quite heavy) When I called the nurse the next day they amazingly had a bed a few hours later, thank god. Its awful but I do feel relief when she goes in, as she always comes out with some solutions to the problems.

Im not sure whats going to happen in there, and what results or options we get from the doctors this week. Maybe its not too late for the peg, or they may have some other options, fingers crossed. In the meantime im going to get some sleep! Last night I still woke almost every hour and looked in her room to check on her, but I still had a good nights rest!

Thanks again for all your help and suggestions! ill let you know what the outcome is...