Declining temperature

[mysticunicorn66]

This may be a stupid question, but need to ask. I am noticing a pattern with my sister. Her temperature has been steadily declining. Last week, it was 98.5 and it has been going lower each day. Her temp is now 97.1. Resp. is 20. Pulse rate in high 90's. BP: running 112/73 and sometimes as low as 108/68. She is sleeping more, but still eating when she is awake. Speech and swallowing has gotten worse in the last week as well. Another UTI and fairly dark urine. On cipro for the infection. Just wondering for those who have cared for someone during end stage, does this seem familiar with someone in end stage where the end is near?

I am trying so hard to get my Dad and my brother to recognize that, barring a miracle, she is terminal. They can't quite wrap their brains around this. Just need to know from those with more experience with this, is this something that normally occurs when death is near?

 

[kmendsley]

I am not sure this is a near the end thing...but her other symptoms suggest that physically she is not doing too well.( dark urine, pulse, and als related symptoms). Some people just run nataurally low in their temp. I always in the low 98 or 97 range...since I was a kid...just think it is a way my body copes.

Have you tried putting some blankets on her to warm her up a little and see if there is a difference? She may be cold

Hope you figure out the problem.

 

[Al]

This may give you some insight on what to expect.

AL

Preparing For Approaching Death

 

[trfogey]

I am trying so hard to get my Dad and my brother to recognize that, barring a miracle, she is terminal. They can't quite wrap their brains around this. Just need to know from those with more experience with this, is this something that normally occurs when death is near?

Is there any particular reason that you folks haven't gotten involved with a hospice agency? Denying that your sister is terminally ill may be comforting to the other family members, but it's not doing much for getting your sister the care that she needs and it puts you in the "Gloomy Gus" role, having to be the bringer of bad news and the responsible adult while all the other adults stuff their fingers in their ears. Not to mention the fact that hospice usually provides counseling for the whole family, if needed and/or wanted, that will help get everybody up to speed and on the same page. Your sister can surely use that kind of support and it will help you out too.

None of your sister's signs sound particularly alarming, but it sounds like she may need medical followup on a schedule, rather than on an "as needed" basis. The extra sleeping, higher pulse and respiration rates might be related to the UT infection, but also might be related to weakening respiratory muscles. If she has a BiPAP for nighttime use, she might try using it during the day. If she doesn't have a BiPAP yet, this may be the first sign of needing one.

Good luck.

 

[mysticunicorn66]

She is on hospice. I called the hospice nurse. The social worker came by and the nurse and talked to Dad. At this point, they said that they will continue to educate him. She also has a BIPAP, but is fighting on using it. It was prescribed for nighttime useShe says that it causes her to breathe deeper than she is accustomed to doing even before ALS reared its ugly head. Plus, even with the head strap and chin strap done snugly, she said that it woke her up in the middle of the night because it was making her lips do like a "motor boat" kind of sound while she is sleeping. She has the mask with the nasal pillows because she said that she find it easier to breathe through her nose than mouth and has always kind of "freaked" when her nose and mouth is covered kind of thing when she was much younger. She thought the mask would feel that way and that is why she opted for the nasal pillows. Her pulse rate has always been on the low side. If it went above 70 when she was at rest, it was a rare time. Her temp has also run in the normal body temp range. I know that the urine is dark both due to the fact that try as we may, sometimes she just does not want to drink much, so I try to make up for it by using the baby foods (yes, I know we can use a blender, but Dad is just not the cooking type--blender would be challenging for him--it took me quite some time to get him to get a phone that wasn't a rotary one and a colored TV)--not good with change.

trfogey--I have been handling a good 95% of everything up until recently(care, laundry, legal work, dr appt, insurance, banking). I just couldn't do it alone any longer. I am working part-time during the week and raising 2 teenagers. I have one set of caregivers coming in for 12 hrs/week to help out, I have a hospice volunteer during the day for two days a week for 2-3 hrs each of those days. I have a hospice aide coming in 3 days a week and a hospice nurse coming in 3 days a week. I just hired another person to pad in some areas during the day. I am trying to make sure that there is someone there during the day while I am at work with Dad to help out.

kmedsley--Yes, she does get cold. I have offered to get a lightweight blanket for her, but she doesn't want it because it is too heavy for her and she can't move it. God love her, she wants to try to do things for herself, and if she doesn't want the blanket, well, I have a heavier sheet and I turned on the oil furnace to keep it 70 in the house at all times.

Thanks, Al, for the link. Father-in-law died suddenly and didn't progress like my sister so I am in uncharted waters here. I know "about" what to expect, just not sure of what indicators I need to watch for to perhaps call the chaplain in to come and speak to my brother and Dad. I know neither one of them have been the same since my Mom passed away.

 

[Lobster]

I sleep on top of a cheap electric blanket set on low or medium. It is cheaper than a heated mattress pad and easier to toss in the washing machine. You can pick up a couple real cheap from Wal-Mart or Costco. I don't like heavy blankets that I cannot maneuver on top of me.

 

[LizT]

I didnt read through everyone else's replies (sorry) but her low temp may be just from her lack of movement. my pals has been completely paralyzed for 5+ years and his now normal temp is between 96.somthing and 97.something. We use a heating pad under each hand and put mitts and a thin blanket wrapped aroung them. He also gets a heating pad under his slippered feet. we wrap his legs with a blanket and he gets a small blanket drapped over his shoulders.

 

[mysticunicorn66]

Temp has been running 94.7 to 95 today. She says she feels cold, but I cranked the heat up some. Put a fleece polo style shirt on her to try and warm her a little. I got some small fleece throws and put them on her lower half. She didn't growl about them because they weren't around her hands Got three of those heating pads that you can put in the microwave to heat them up. Wrapped them in a towel and put then under her hands and feet. She said she felt a little warmer. Her room feels like a rainforest that it is pretty warm, but she is cold. Small BMs last couple days. I gave her a suppository, but cannot feel anything in rectum where I can reach. She has been eating some, not a lot. Drinking some. Urine looks better. Trying a dose of lactulose tomorrow am. She is taking more in than she is putting out right now.

 

[notme]

Hi

The vital signs in your first post are all within normal limits--though the second blood pressure is clinically a tad low, it's not alarming, as trfogey said.

Generally, pulse should be between 60-100, resp rate 12-20 and BP systolic above 90 and below 140 and diastolic between 60-90.

The temp of 94 is definitely too low. As suggested, an electric blanket. As strange as it sounds--a severe infection can actually cause a low body temp when the body stops fighting it.

Dark urine can be a sign of infection--but also of dehydration. Is she getting plenty of fluids? It's not abnormal to not have bowel movements if she isn't eating. Is she complaining of abdominal discomfort at all?

Her vital signs, though, don't shout "The End Is Near" at this point, I don't believe.

My thoughts are with you all

 

[mysticunicorn66]

@notme: she is not complaining of abdominal discomfort.

She is sleeping more and more. Doesn't want to eat or drink much. Speech is getting harder to understand and swallowing is worse. Just in last week, she has lost most of the use of her hands. hospice nurse said to try to get her to eat an egg a day. However, the last one took nearly an hour for her to try to eat. She was just spent when she finally finished it. Aside from that, I have been giving her pureed foods, yogurt, and ensure. Today, she ate a little oatmeal, 2.5 oz of carrots, and an ensure shake, a few ounces of water, and about 4 oz. of juice. That was all she had for the day. Just could not get her to eat or drink anything else. I know that she must get tired of me asking her, but just want to make sure that if she wants to eat/drink that I bring it to her. She tried to hold the spoon today, but started to cry because she couldn't make her hands get the spoon to her mouth nor could she bend her head forward to the spoon. I gave her a break and got her calmed down. Told her that it is not a crime to ask me to help her...that is what I am here for. Been a huge dose of humble pie for her because she was fiercely independent before this beast struck.

 

[notme]

I'm assuming that she chose not to get a PEG?

How's her temp doing now?

 

[mysticunicorn66]

@notme--It's not that she has chosen not to PEG exactly, but more that she can't sit up for any longer than 5 minutes and she is yelping in pain. Hospice nurse said that she would be at high risk for the PEG contents going up her esophagus and her inhaling into lungs=pneumonia. She opted not to get a PEG for that reason. Her temp is hovering between 94.7 and 95.4. I have tried an electric blanket under her for a few minutes, but she said that it made her back "sting"? So, I moved it from under her to beside her thinking if she got some of the heat from it that it might help, but she said it felt like she was crowded in the bed with it beside her. I removed it for the night, but am going to try just maybe putting it under her legs to see if that helps any. She only drank 2 Ensures yesterday and I couldn't get her to eat or drink any more. I'm not a genius, but I know if she don't eat or drink more than she is not going to be with us much longer...

 

[mysticunicorn66]

She told us that she is having a harder time breathing. Hospice is ordering a concentrator for her. She has the BIPAP, but tells me it makes her breathe deeper than she is used to. I don't know anything about re-calibrating it to make it more comfortable for her. She tells me every day that she just wishes she would die because she doesn't know how much longer she can do this (guessing she means exist this way--I don't ask her as she is already upset when she is saying things like that...I just let her express herself and comfort her the best I can).

 

[notme]

HI

I'd ask the doctor instead about the PEG. Many in bed are using them. As for the bipap--check with RT or the pulmonary dept to see if the settings need to be adjusted.

Are they treating her pain? It sounds like pain meds are needed at this point. I'm so sorry you're all going through this.

 

[mysticunicorn66]

she is on fentanyl patch for pain. also, neurontin and flexeril for the nerve pain and muscle spasms. Drs around here are pretty clueless how to deal with ALS. Her dr told us that she was the first patient with it that he had had. Since she was diagnosed, he now has 3 more. She lays fairly flat in bed because her muscles, etc on her bottom are so atrophied that she can't stand much pressure on it. That is why the nurse said what she said regarding the peg tube. She, at most, lays in the bed between 15 deg and 20 deg elevation of the head of the bed. Just seems like every time I see her, I can see a vast difference in her speech, swallowing, and how much she can use her arms/hands. She cries a lot to me that she wishes she would just die. Breaks my heart to see her go through this. She cried yesterday because she was itching behind her ear and couldn't get her hand up to it to scratch it when she could just a week ago.