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Jun 23, 2005
Hello to all,

Some may remember me most may not. A quick update. My (step)mom was diagnosed with ALS in May of 05. What a rollercoaster ride WE have been on. I care for my mother 7 days a week. We have now gotten help in their home around the clock.
Most every day is soooo draining caring for her. As of last Thursday she developed a U.T.I. also a rash that itches badly, her feeding tube has started to oooze icky puss and her vision has gone hay wire, meaning seeing double or blury and or dizzy. In one weeks time she went from being able to shake her head, sit up, motion with her hands write notes to now just being awake but off in left field. WHAT IS HAPPENING? Hospice can't give any answers. She is on a antibiotic now for the UTI but not much improvement at all. Is there hope that all of this was caused by the UTI and hope is around the corner or is this the end?
My mom to this day has not spoken about how she feels regarding ALS or dying. This is so very hard. Do I pray for her to go or do I pray for her to stay? What is the right thing? I wish I knew.

Thank you for letting me cry online. This disease is so very CRUEL...............

Shelly Fowler
Hi Shelly. I do remember you! I was impressed then and impressed now with your commitment to your Step Mom. Some people won't give as much kindness to their own spouse or child and you are a remarkable and special person to take on all this!

I am sure it is natural to feel overwhelmed some days. Who wouldn't. I am so sorry this is happening to you and your family. I hope you are able to take a short break from all the responsibilities and worries today. Please know that you are not alone and please stay in touch! Cindy
Dear Shelly, I truly understand the anguish you are feeling. It is so hard to see your loved one suffer, especially when you have been doing everything in your power to alleviate that suffering and keep her with you.
From your description of the feeding tube site, I think it is important to have a doctor look at that right away since the antibiotics for the UTI may not be affecting a possible different infection at the PEG location.
If your mom has any coherent moments, if you can ask her about her wishes it could help you know what to do. You are following your heart and it is full of love. I am sure she knows that even if she can no longer communicate.

My heart goes out to you. I cannot answer your question because I honestly do not know but I just wanted you to know that my husband and I care. I wish there was a cure and not one of us would be going through this.

Hope and Sandy.
Hi Shelly. Sorry you are having problems. If your mom has been on the antibiotics for 3 days and you have not seen an improvement and it sounds like she is worse she needs to see a doctor again. Don't give up yet. AL.
I wish I had a crystal ball

Hi to all of you wonderful people. Thank you for all of your kind and supportive words. When my heart aches so badly I know that I can be picked up by most in this group. Huge thank you.

I have been away from the group only because I have no time to chat. When I dropped my note this morning I wanted so badly to get caught up. I seriously doubt that will happen. Am I bad, I made my 5 yr. old late for school today because I had to sit and vent, ask questions and also sob.

Now that I have put in another day with mom, here is how she is doing. As for her UTI that seems to be doing better. Dad HAS TO HAVE A SCHEDULE, he's driving me crazy, wouldn't take much. Mom was doing Neb. treatments every 4 hrs. throught the day whether she needed to or not. These past few days I have made dad go without a schedule and let her sleep, with this I have found she really don't need those nebs as often and she is less phlemy. Not as much coughing. The coughing is really hard to sit and watch, she is so weak that she can not take a deep enough breath to do any good. This weakness has also brought a new job for us and that is to suction her out. The tube site, the hospice nurse has been in contact with moms dr. and the recommendation is and was to give her a dose of di-flu-can (sp?) we did this yesterday afternoon sooooooo I'm hoping that by tomorrow things will look & smell better. AS for the rash or hives (whatever it is) it has completely covered her back, sides, armpits, bottom and the upper part front and back of her legs. It's not on her tummy, face, neck, or her lower legs. This one really has me baffled. She also tends to be very very spacey at different times through out the day. She will have spirts that will last maybe 10 mins when she is awake and seems to be herself. Her vision goes in and out of being blury also.

My mom gave me a wonderful Christmas card that I will keep for the rest of my life. She told me thank you for all I've done for her and for being so patient with her and for coming into her life. Then she signed it Chickie Babe. She insisted that I open the card in front of her and of course I sobbed like a fool and of course she laughed. As for the way she signed it that is what I call her. I started calling her that when she was being a booger and I was losing my patients with her. She does not know that's why I call her that so shhh. LOL

This last week she has NOT laughed and how I miss that. Today just to be silly my dad brought in this UGLY knitted hat that someone gave him and when he wasn't looking I put it on mom, oh how he laughed. I'm pretty sure I heard and seen a little laugh out of her too.

My brothers (step) still don't come by or call but only on the Holidays. THEIR LOSS, I try not to think about what mom feels about it 'cause it only makes me angry. What comes around goes around.

I must close for now. I wish all a wonderful night and even a better tomorrow. Again thank you. I will try to keep all of you updated. Maybe I can stop in in the morning just as long as I don't make my little Eden late for school. Take care!

Sweet dreams,
Hi Shelly, I am a first grade teacher. I think it is fine for you to bring your child late to school when there are things you need to take care of at this painfully difficult time. Let her teacher know what you and she are going through. Maybe even take a day or afternoon off school to spend with grandma. My father loved having children around him always, but also in the weeks before he died. His eyes would light up and have that sparkle of life that seemed so hard for him to muster in his times of exhaustion.
Hi Shelly,

Your poor mother has the added discomfort of a rash... has the doctor seen it? Does she have a temperature? Is the antibiotic she is taking causing it? These are questions that the doctor needs to be asked.

Take care.
Hi Shelly, Al again. Has your mom ever had chicken pox? It sounds like she could have shingles which is for lack of a better description, adult chicken pox. I'd suggest that to the doctor if she had chicken pox as a child. Hope she is feeling better and you get a bit of time for yourself. Being stressed is not good for you. AL.
Chickie Babe

Good morning,

After reading my post this morning and seeing a first grade teacher read it also, hmmm can you tell I had company while I was trying to do it?! This is another hard piece of the puzzle, my two little ones wanted mommy time too. I think they are ok with all of this. All they really know is grandma is sick. My little Eden wrote a letter to Santa (which came out in the newspaper) asking him to "Please talk to Jesus and see if he can make my Grandma Barb and Papa Bud feel better for Christmas". Tug at my heart! Her Papa Bud (her daddys side) has Parkinsons, he is not doing well either.

Thank you Al for the tip of Shingles. I will now demand Hospice get one of their doctors out to the house. Demand in a nice way of course.

The grandchildren, they do not light up grandma's eyes. Infact she gets adgitated when they are around. Mom has always been a "clean freak" so when the kids are around she will not take her eyes off of them. Might I add thats when we would hear her grunt a great deal. NOW the newest grandbaby is 7 mo.s and SHE DOES light up her face big time. That is ok, I do understand.

Better run time for Eden to get to school. Have a good day!

Hi Shelly. Hope your day went well and I hope you found out what is causing Mom's mystery rash! You have a lot on your plate right now but you seem to be handling it with grace. Where, I wonder, do we find the strength to deal with all that life tosses our way? Keep up the good work! Regards, Cindy
Shingles would follow a nerve path (make a pattern on the body that follows a nerve pathway)....

Is the antibiotic she is on new? Perhaps a reaction to that?

New things (nutrition or otherwise) going into the peg tube? perhaps a reaction to that?
Pearl said:
Shingles would follow a nerve path (make a pattern on the body that follows a nerve pathway).... Moms rash seems to be like a long sleeve shirt. Meaning it starts at the bottom of her neck covers her back and arms. She does have it on the top of her breast and her sides. Not at all down the center of her chest or her stomach. Then it picks up on her legs and behind. According to Hospice today they have seen three other patients (lately) with the same thing but no answers. I was told that they (hospice) was getting intouch with "infectious disease" to see if they have any answers.

Is the antibiotic she is on new? Perhaps a reaction to that? As for her Antibiotic, the rash was there prior to.

New things (nutrition or otherwise) going into the peg tube? perhaps a reaction to that?
New things, nope that is not it either. Moms diet consist of Pulmocare, Resource Juice and Water and of course all her meds. This has been her diet for at least one year.

Honest to goodness she literally woke up one morning with all this happening. Dizzy, seeing double, smelly tube site wih mucos, tender at the site, the rash and the UTI. Now the only changes is the urine is a lot lighter and no longer strong smelling. Her writing has improved a little, not much but a little. To make things a little more (ok a lot) more complicated she has the direah due to the antibiotic. On my shift (as dad calls it) mom had to be put back in bed to be able to throughly clean her up 4 times. I am keeping my fingers crossed that she dont get a bladder infection next. We have had enough of those.

Good news, moms primary doctor has agreed to make a home visit on Monday after hours. I hope she brings some answers. Hospice has also contacted moms Neurologist at our request to see if he will make a home visit. Months ago he said he would. I do believe the last time she seen him was at the begining of summer.

Time for me to turn in, I promised dad I wouldn't be late tomorrow, he's gonna take my oldest one to breakfast. Hmmmm I don't get breakfast, something wrong with this picture. Kidding, he needs time away.

Wishing you all a good night and a better tomorrow!

Sweet Dreams,
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