The 10%

IMG_0669This is the blog I mentioned in Wonder Woman (Sept. 8, 2018), when I promised to tell you about the other 10% that I have not written about before. It may probably the give you the willies, but why bother writing if you don’t tell the truth? Wouldn’t that make you really mad. Like fake news?I asked for input from other PALS and CALS and will try to include it if I got any input or I may decide that I need more than one blog to put it out there.

When I finally stopped working, I stayed home without an aide. It was OK for a few months then I needed an aide. It was a little strange getting naked and having a stranger give you a shower. We did fine. All of my aides were professionals and most all did a great job for me. There were some clashes in personalities and I had to get rid of at least two aides who got on my nerves.

Then there is the indignity of using the toilet. Your body is the test ground. You either accept the way the aide cleans you or you have to direct them about what you want. I had to ask one aide to change gloves after I used the toilet and before my shower. I now have an aide who goes through at least eight pair of gloves in three hours. But now Medicare pays because I am on hospice. Constipation, diarrhea, and uncontrollable cramping and quick diarrhea are some other fun parts of the disease that I have will leave to your imagination, or have I already ruined the best part for later? There is also the constant hacking after eating and the constant phlegm ball you feel in your throat. PALS you may want to ask your doctor about a nebulizer if you have this problem.

I go commando because it is easier for me. Putting on pants is impossible. Skirts are now my new form of clothing. I put them on over my head once I am in the wheelchair, then the blouse is next over the head. Works for me. I also had some wonderful friends and neighbors who altered pants for the winter and made me an adaptable jumper.

I went through several types of beds and devices in order to attempt to sleep in my own bed. I already had a hospital bed waiting. I could not get comfortable and I woke my husband almost every night for some annoyance. He was still working at the time so this was a major inconvenience for him. I eventually gave up and slept in the living room in my lift chair. This worked OK for a while. I would occasionally have to call my husband on the home phone in order to wake him if I needed something. You see, I lost my voice and my husband is hard of hearing. Karma.  Several times I have had to use my iPhone call to wake my husband. Now I have a Tobii that allows me to call, text or set off an alarm.

My husband did not like the idea of me sleeping in another room so he went out and bought me a second lift chair. That is the most comfortable lift chair and it was on sale! I would recommend it to anyone. It reclines fully like a bed and gave me the most comfortable sleep.

I had to give it up when I lost a lot of upper body strength and I could no longer use the sara stedy to pull myself up. I was now begging to use the Hoyer lift to put me in and out of that hospital bed. I decided to give it a try again for the sake of my caregiver, my husband. The last straw came when I had a fill-in aide and I slid out of the chair and onto the floor. To my surprise, EMTs are not trained to use a Hoyer lift. Luckily my aide knew how to use it and helped get me off the floor. EMTs are also not in a hurry if you don’t appear injured. I still wonder how they would have gotten me off the floor if it had been an emergency.

I now sleep in the hospital bed with lots of pillows and an air pressure mattress provided by hospice. It works wonders. No more pressure pains waking me up in the middle of the night. My hubby loves that part a lot. I don’t have too many problems now that I have become the pillow lady. Pillows under my arms has also solved the neuropathy in my hands so far.

But it is a problem when I can’t activate my speech device to wake my husband. We still have problems positioning the Tobii at night. Part of the problem is that I can no longer use the remote control for the bed. I don’t have enough strength in one finger to change the bed’s positioning. Is there not one hospital bed company that can make a remote control with infrared (IR) technology? Having IR technology would allow me to and all eyegaze users to use their eye-tracking devices to change their bed positions.

Losing arm strength was a huge fear. I cannot comb my hair, brush my own teeth, clean my ears, or scratch, pick, rub, blow, or clean my nose by any methods. Forget about itching anything; it’s an impossibility. You have to depend on some one else to do these things. Wedgies are a painful blessing when you go commando and I find that a sanitary pad works wonders when properly placed. So are there any volunteers out there?

I have learned to live with a lot of annoyances. I play a game that I call mind over matter to get past a lot of these things. I want my caregivers to have lives too. I just imagine the pain away. It used to work when I had a leg cast with an itch I could not reach. There was no way I was putting something down the cast that would cause further problems.

I  am not sure if you got the whole 10%. I will need to make another review tomorrow to see if I left out any goodies you just have to know about. And I still have the cough from my 17 hour Florida nightmare trek home. Hospice nurse and priest visiting today; seems appropriate somehow.

8 thoughts on “The 10%

  1. Joanne Harper says:

    Kathryn, I hate that you are going through such tortures! ALS is such a horrible disease. My heart just breaks for you and Joe. And yet you still show strength in keeping up with your blog. I can hear your voice when I read it. I love you dear friend. I’m praying for you everyday. You’re always, always in my heart. ❤️


  2. Dianne Fuglsang says:

    I love it that you are so honest . I also have this horrendous disease – not as far along as you but I want to know what’s around the corner for me . I can’t imagine why some people sugar coat it .


  3. Laura Gibney says:

    Kathryn you are truly educating us anout this horrendous condition. Thank you for that. It is so very saddening that you and others have to experience this.


  4. Tricia Gonzalez says:

    Kathryn, thank you for sharing your life. Your narration of your day to day is truly eye opening to what most of us do not think about but you deal with so bravely. I hope and pray that you and Joe remain strong. Keep writing and sharing and know that you are being thought of. I pray for you and your family.


  5. Stanley Goldwaser says:

    Hi Kathryn, I just read your blog, and as always you have such a great way about you for telling it like it is. Shitty as it may be, It is truly a relatable thing, especially when you get old (older). Also, I have a cold right now, and I’m hacking up a lot of phlegm, and it’s excruciating. So, one can only imagine what you have to deal with.


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