Changes

In the last 2 days we have changed my Moms nurse, pain meds, and anxiety meds. We have been busy! Some of these posts may seem mundane and boringly detailed but I am trying to give details for those who are also dealing with ALS. One of the most frustrating things for me as a family member of someone with ALS was having no rough guide as to what kind of process to expect. I know that everyone case is different but I would have loved some idea of what kind of road bumps to expect. I know there are several readers that have found this blog because they have ALS or are the caretaker of someone with ALS. These kinds of posts I hope will help serve as a rough guide for others.

First of why we changed our nurse: I'm sure our first nurse is a great nurse for some people but her personality was not the best for my Dad and I which is really important since we are ones that work with her the most. We asked for a change and the Nurse they sent yesterday was great. She was much more calm, very organised, and very methodical. We are happy we made the change because we need someone that brings us and our home a sense calm. Darlene is the right fit for our family.

Second, we changed her from morphine to methadone. We were needing to go up on the morphine every couple of days and they recommended we try methadone instead because it is longer lasting and it can be given every 8 hours and should keep her more evenly comfortable. We can still use the morphine for breakthrough pain and discomfort.

We also switched her from Seroquel to Lorazepam to treat anxiety. My Mom did not do well on Xanax. We were told that it can make some people act like a mean drunk - she wasn't that bad but it was enough that we didn't want to use Xanax. That's when they gave us the Seroquel which worked but I'm not sure why they tried that one next. In the comfort pack hospice brings they use Lorazepam and it is suppose to work really well with morphine and methadone. They are suppose to each make the other more effective.

Now our only problem is that she woke up this morning with something similar to lock jaw. We have someone coming here soon to check her out. Guess the G-tube is a blessing once again :) My Mom is taking about 1-1.5 cans of Ensure a day and probably around 3-4 cups of water total. But then again the Lorazapam and the methadone are given in the cheek in liquid form so we really need to figure out what is wrong with her mouth.

Her strength has decreased so much that we are almost to the point that she is dead weight when we lift her. We will have to start using the lift we have soon or she will have to stay in bed with a catheter.

Her breathing has changed significantly. As of Thursday night when she first had that breathing attack she has been wearing her mask almost all of the time. She takes it off for about 5-30 minutes but that's about all. Before that she was only wearing it during the night, naps, and very sporadically in between. We have her pressure up to 14.8 now. Manny said he actually has someone at a pressure of 20 so we will have to see what she can tolerate. There will come a point when the pressure is too much that its uncomfortable or she wont be able to keep the seal closed. When that point comes Darlene said we will put her into a very comfortable coma so she wont feel like she is suffocating.

The nurse also heard a wheeze in her lungs yesterday for the first time. That's not a good thing. From what we understand that might be the start of fluid in her lungs. If she gets fluid in her lungs they can not do anything to help her and it will turn into pneumonia. This last Monday the admitting hospice nurse said she might expect to see fluid start in my Moms lungs in about a week and it seems she wasn't far off. I tried to listen today and thought I would be able to hear the wheeze since I am use to listening for it in my asthmatic son's lungs. I could hardly hear anything at all, let alone a wheeze. When I could hear anything it was only when the stethoscope was up near her shoulder blades.

It seemed for a time that my Moms lack of strength and lack of appetite might actually claim her life before her breathing did. With the changes we have seen in the last couple of days that doesn't seem to be the case anymore.

We feel very confident that with Darlene and hospice's help that we will be able to make it through while keeping my Mom as comfortable as possible. My Dad has been a hero in the last week. He is even more patient and more loving with her. He cares deeply about how she is doing and is methodical about her, her care, and he is advocating for her. It is very touching to watch.

Thank you all for your prayers and kind e-mails. I am sorry to say that we have been horrible at thank you cards or responding. Please know that each comment, letter, e-mail, meal brought in, soda delivered, babysitting act, and countless other little act help lift our burden and make it feel lighter. All the movies, games, books on tape that have been lent have done so much to help keep us all sane. Your smiles and hugs are making it possible for us to make it through this process. I often think of Moses in Exodus 17.

11And it came to pass, when Moses held up his hand, that Israel prevailed: and when he let down his hand, Amalek prevailed.

12But Moses’ hands were heavy; and they took a stone, and put it under him, and he sat thereon; and Aaron and Hur stayed up his hands, the one on the one side, and the other on the other side; and his hands were steady until the going down of the sun

Our sincerest thanks to all of you for keeping our hands steady!