How much fluids???

abc123

How much fluids should my mom be drinking during a 12 hour period? During the day, from 8am until 8pm, she is drinking at least 2 bottles of water, a large glass of milk and fruit juice. She eats only baby food now because of problems with pocketing and swallowing. She eats and drinks small amounts several times a day. She is completely bed bound and we turn her faithfully every two hours. She rarely moves on her own anymore. It is our understanding that she is late stage 7. She is seen every Friday by her hospice nurse. How much should she be urinating? We keep her clean and dry, thankfully she hasn’t developed any pressure sores. I am home daily with the daytime caregiver and I see the good care mom is getting. I also get up several times during the night to check in on mom and the nighttime caregiver. 

I would greatly appreciate your feedback on this. The nighttime sitter is constantly finding something to complain about. She called me earlier today to tell me my mom is dehydrated and we should start giving her Pedialite to drink. I did the pinch test on moms arm and hand and her skin snaps back better than mine!

May flowers

Hopefully a medical person will chime in, but it sounds like she is drinking well. We just added a Powerade to my FIL’s daily regimen not because he is dehydrated but hoping it will help his low BP.

My VERY limited experience with caregivers so far is many are not familiar with end of life issues. For example, a caregiver suggested to the hospice nurse that my FIL’s arms were atrophied because we weren’t giving him enough protein, even though he eats 2 eggs, sausage, milk, peanut butter and other high protein snacks, ensure, plus meat for dinner. The nurse has said previously that the protein in his diet is helping keep his skin in good shape. I think the atrophy is more a lack of use. 

Quilting brings calm

Sounds like a good amount to me especially with her limited movement.   Can you send a text to the hospice nurse and ask?  Like others, I wouldn’t go by what the nighttime sitter says. Your mom is probably not awake much overnight.  Most of us do not drink much liquid in the overnight hours. 

How are you?  Has your brain settled some now that your dads move is over?   How is your dad coping? 

abc123

Hello May flowers, I think this caregiver is NOT familiar with end of life care/hospice care. She is beginning to cause me a lot of unnecessary grief and I am close to being worn out.

Hello QBC, I do have a call in for our nurse. I feel like mom is doing as well as she possibly can be doing under these circumstances. Dad is having a rough time. One of his dearest friends has cancer that has returned and spread. He’s late 80’s and has moved into an AL facility and is content. My dad (85) seems to be having problems accepting the fact that we will all die eventually. He is running me ragged. He expects me to help him at the new house everyday! I am tired. Very tired. I don’t even have time to check in on everyone here. Take good care of yourself!

M1

Glad to hear from you abc, I've been wondering how things were.

Sounds like she is drinking plenty.  I don't know that there's any one right answer.  The pinch test on her skin is as good as any, and really--since you are clearly at comfort measures--if you offer fluids and she takes it, great.  If she doesn't, I wouldn't worry about it and just offer again.  And it sounds like you are clearly taking great care of her.  

If the caretaker is starting to cause problems, can you replace her?  Some people just really aren't comfortable with the dying process and don't want it to happen on their shift.

abc123

Hello M1, it’s so nice to connect with you! You are in my thoughts everyday. I’m so sorry that you aren’t able to have good visits with her. Hopefully that will change very soon. This disease sucks and I hate it for all of us, especially good people like you and so many others here. My mom is wasting away little by little and my siblings don’t come see her because it upsets them. Please take good care of yourself.

Battlebuddy

   Dear ABC123,

 Good to hear from you. I’m no expert but I am slightly behind you on the road. It sounds like you are doing a great job at keeping your mom comfortable. I think that sounds like a lot of fluid. I give my husband about three bottles a day, but the rest of the time he is sleeping. During the night your mom should be sleeping. 

  I agree with M1 . Liquids are going to fluctuate because they sleep so much . It’s not as important as keeping the skin in good shape. I’m sorry you are getting broken sleep. It must be contributing to the exhaustion .It all sounds hard. I hope your hanging in there. prayers heading your way. 

abc123

Hello Battlebuddy, thank you for the prayers! Always needed and appreciated. I hope things are going as well as possible for you.  

The nighttime sitter said she is worried because mom isn’t urinating a lot, she’s not soaking her diapers anymore. The hospice nurse tells me this is to be expected and that mom is doing as well as she possibly can. The sitter is constantly bringing up issues that are common end of life issues. Short of letting her go, I don’t know what to do. 

ButterflyWings

Hey abc123 - thinking about you and sending loads of well-wishes for peace and strength.

The nighttime sitter may need to be furloughed. She is there to help you, not stress you out. You are doing an amazing job of providing safe passage for your mom and having someone complain when you and also the hospice professionals are attentive to your mom's end of life comfort needs...well, it just isn't helpful at all.  

I'm sorry you are having to deal with this second-guessing or creating a mini-crisis where there is none. I know how much work it is sometimes to let someone go and then hope the replacement is available quickly and is a good fit. But it really does seem like she needs to go if she won't accept a course correction (as in, cease and desist). 

mommyandme (m&m)

abc123,  glad to hear from you.  Maybe a conversation with your stressed caregiver could help. Finding out what she’s comfortable with.  If said caregiver feels your mom is being neglected (obviously she’s not) and can’t reconcile this with end of life, she should probably accept her limits and move on. You need support, not second guessing.  You’ve got experts in your moms corner too and your gut instincts.  Don’t spend any more time with this situation, instead surround yourself with the care you need.  I know that’s hard.  Also sorry you’re  being pulled into your dads discomfort too.  Ugh it’s just so much.  Sending hugs and warm thoughts to you and yours.

abc123

Dear Butterfly and M&M,

Thank you for your words of encouragement and the wise council. I have started looking for a replacement. I will have a talk with her first and see what comes of it. I hope you are all doing as well as possible!

May flowers

I hope you find a good fit. It is exhausting looking for caregivers! Ours flaked out and stopped showing up - the agency can’t even reach her. We had a fill in who was working two shifts and was nearly asleep on her job. She talked incessantly and while I didn’t mind, it drove my FIL bonkers. She had a heavy accent and he couldn’t understand her. He was nearly in tears over it today. They were going to send  another fill in tomorrow and start a new “regular” Thursday, I told them don’t worry about tomorrow (takes more time to show them around for one day than to do it myself, lol). The next one was hand picked and hired (currently going through orientation) based on the nurse recommendation who did our assessment. I really like the nurse, she just went through this with both her parents in five years and “gets it”. Fingers crossed that this one sticks!

Anyway… abc I hope you find just the right caregiver who will take stress off you, not add on! It’s hard enough as is.