I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Auntie V on February 13, 2009, 09:08:46 AM
-
Mom made the decision yesterday to stop dialysis and come home with hospice. The only way she would be able to continue dialysis is if she would move to a long term facility with on site dialysis. The only one near us is about 40 miles away. They also told her that even with dialysis that she only has from 6 weeks to 6 months to live. She just wants to come home. We just lost my Dad in November and now it looks like Mom will be joining him soon.(http://www.smileycons.com/img/emotions/214.gif)(http://www.smileycons.com/img/emotions/214.gif)
-
Although this is obviously hard on you Auntie V it sounds as though your Mom is pretty clear about what she wants. I hope they make her very comfortable and I hope that you will take some comfort from the fact that you tried your best to support and help your Mom during her illness. That support is a huge thing for us patients and your Mom is lucky to have such a caring daughter. I'm so sorry that you will lose both your parents so close together.
:grouphug; :cuddle; :grouphug;
-
Please dont beat yourself up Aunti V.
You can only offer your thoughts and concerns to your mother.
It seems to me that your mother is ready to go and be with her husband your father.
And with six weeks/6 months i truly cant say that i wouldn't do the same.
I realize it is hard on you and others in your family. But i do think it is ten fold for your mother.
Please just enjoy the time you have with her. Try to make her feel comforted and warm with her decision.
Big :cuddle; :grouphug; to you and yours.
P&K
-
if i was told that i only had 6 months to live i would set out to prove them wrong. but then that's me. your mom has made her decision and no matter how anyone feels about it it's a decision she has a right to make. hopefully hospice can make her comfortable so that you can enjoy whatever time you have left with her. :grouphug; :grouphug; :grouphug; please take care of yourself. since we live so close i'm sorry i will not have a chance to meet your mom. again if there is anything i can help with please let me know.
-
:grouphug;
-
:grouphug; God Bless.
-
:cuddle;
-
That's a hard decision I think that probably gives all of us pause for thought AuntieV. I'm really sorry for your pending loss but her suffering will end, once and for all, and that is a positive. If there is life after death, she will be happier with her loved ones there. If there isn't, she will still be free from pain and suffering. I wish you peace with this and may your grieving be swift and true.
love
LL
-
What a tough thing to face, I hope your Mom finds peace. :grouphug;
-
Hope hospice keeps her comfortable. Be sure you take care of yourself during this time as well :grouphug;
-
:grouphug; God Bless also Yvonne
-
This is sad news, indeed. If I were in your mother's shoes, however, I think I'd choose the same thing for myself (now, if it were Marvin, I'd probably feel differently). Our experience with Hospice (for Marvin's brother just recently) was a very positive one. The Hospice folks who came in and helped us with Buddy were wonderful -- just wonderful. One NA (April was her name) was so gentle and loving with Buddy, but she laughed and joked, too (and, sometimes you need that as well).
My thoughts are with you and yours at this most difficult time. Treasure every minute -- every single minute -- spent with your mom. But, then, that's something we should all be doing as well, shouldn't we?
-
I can appreciate how difficult this might be for you and your family. All I can do is let you know that your IHD family is with you all the way, holding your hand in cyberspace and sending caring thoughts for your mom. :grouphug; Please continue to keep us updated. Thanks for sharing with us :cuddle;
-
This is a hard decision for your Mother to make. I hope she is treated with love and dignity. :grouphug;
-
I am so sorry :-*
-
The folks from Hospice are wonderful people. They will help both of you.
A tough decision for your Mom to make and for you to deal with, but the
choice was hers. My thoughts and prayers are with both of you.
-
Oh dear mate
This is sad news
Your Mum's decision is heart wrenching but it is her decision
Enjoy your time with your Mum
It is so sad when we love so much
I have tears in my eyes and heart
I am scared that my Dad will make the same decision as your Mum but we need to respect their rights
I hope this post gives you and your Mum strength and comfort
Lots of love and prayers mate
Take care
:flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower;
:grouphug;
-
:cuddle;
-
:grouphug;
-
Sorry to hear this sad news, but I fully understand her decision. All you can do is be around for her and let the hospice carers look after her pain etc. Try to make some good memories for yourself and come here as often as you need - these guys are the best for giving unconditional love and support :grouphug;
-
It's sad and it's hard to imagine letting go someone who wants to stop treatment. It takes a real loving family to be supportive, whatever the outcome. It's clear that you love and respect your mom and I admire you for listening to her and honoring her choice. Best wishes to you family. HUGS for you. :grouphug;
-
Thank You all for your prayers and warm thoughts.
She is home now. My brother has come down for the weekend from Wyoming to help get her settled in. We had Dad here at home with hospice for over 7 months and they were wonderful with all of us. It is very comforting to know what to expect this time. Some of our help will be the same people that were here for Dad so they already know us.
I will be setting up her care area today so we will have everything handy. My only problem is that I put most of Dad's sheets away and do not remember where I put them. I am sure that as soon as I go buy a couple more sets the others will show up.
-
Back in the comfort of home.
Not an easy to make.
-
:grouphug; Auntie V. Thoughts and prayers are with you. Please take sometime for yourself. :cuddle;
-
I would make the same decision as your Mom. She is very brave and must have faith as to where she is going. Give her a hug for me.
Try not to think of the loss at this time and enjoy her and talk and laugh. She is making the right choice. Dialysis kept her alive for a little while and that is more than most people get when they have an organ fail.
:cuddle;
-
Love and a hug....
-
Spend as much quality time and share some laughs together while you can.. :cuddle;
-
Oh my this is very difficult but who knows how long she can go without dialysis. I think if I was told something like that I'd probably want to gout with a bang and not a whimper (ie: enjoy what time I had left). It a very courageous decision she has made I feel and clearly she is at peace with it - perhaps more so since she so recently lost her husband. Very difficult times for you all - just try and support her with what she wants and to be comfortable and at least now you know and can, as hard as this is, prepare for what is to come. I think she will help you in this regard. I know when my own mother gave up her medical treatment with really 2 or so weeks to go she was at peace with her decision and was able to tell us what SHE wanted in terms of funeral and all that stuff, and beyond. We did get to say goodbye, which is so important.. and I think this will be important to her too.
Hang in there. :grouphug; :grouphug;
-
We had a very good day today. Mom has started eating and will not stop. About every hour or two she is asking for something else. I was able to go to the store yesterday and she asked me to buy some sherbet. I bought a package of 8 little cups of rainbow. We are already down to four. While she was in the hospital she asked for Mac & Cheese so I fixed that for dinner tonight. This went over real big with my brother and Mom.
We will find out tomorrow what the hospital is going to do about forgetting to remove the permacath before sending her home. The hospice nurse thought she could remove it till she called the neurologist. The way I see it is the hospital is going to be footing the bill for this one. They are the ones that packed her up and loaded her for transport without calling me so I feel that they can come get her and fix their mistake. All they were requested to leave in was the Foley cath by hospice.
I will keep you posted on what happens.
:thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx;
I am so grateful for all of the support that all of you are sending our way. It really helps to have a place to come to talk about what we are going through.
Vicki
-
You and your family are in my thoughts...what a difficult decision for her to make but I am so happy you and your family are supporting her and doing everything to make her as comfortable as possible. As others have said, at least you all have the opportunity to say goodbye and also, your mom has the comfort in knowing she is at home with her family there. She is going out on her terms and with a great amount of dignity and that in itself is a comforting thought in such a a difficult time.
God bless :grouphug;
-
Thinking of you and your mom today and sending love...
-
:grouphug; :grouphug; :grouphug; :grouphug;
-
:grouphug; Happy that your Mom had a good day. :cuddle;
-
Make each day special. :grouphug;
-
We will be surrounding you with love and support. :grouphug; These days are a special gift for you and your Mom. When things are hard, I hope you can feel our arms around you, beside you in this sad journey. Your Mom has a very special daughter. She raised a caring, loving daughter and I know she is very proud of you. :thumbup;
-
:flower; Update 2-19-09 :flower;
Things are going fairly well now that we are getting into a routine. My niece arrived today from Florida. Mom is enjoying all of the attention. Diane is right at her side if Mom even makes a moan or groan. She is also taking very good care of Auntie V. She told me that while she is here she wants me to rest and enjoy having some non-caregiver time with Mom.
-
:cuddle; Take her up on the offer. You need your rest. :grouphug;
-
Yes, take her up on the offer.
Sending love...
-
:grouphug; :grouphug; :grouphug;
-
I am sorry to hear about your mom. I am sure this is very hard on all of you. You and your family are in my thoughts and prayers.
-
So glad to hear that you settled into a routine and that you are getting some help. I hope you let your mom know that an entire international community is sending her caring thoughts and are praying for her. I am glad we are able to go through this with you. :grouphug;
-
Just a quick :waving;
Lots of love and wishes to you all
and some beautiful flowers too
:flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower;
-
Thinking of you and sending love...
:flower; :grouphug; :flower; :grouphug; :flower; :grouphug;
-
Keeping you and your Mom in my thoughts and prayers. :grouphug;
-
I hope your Mom is at peace with her decision and that she is resting comfortably.
:grouphug;
-
Your niece knows what she is talking about. Non-caregiver time is soooo special. My sister tells me 'yeah, I spend a lot of time with mom, but that's making phone calls, paying bills, cleaning the house, making supper, and doing her meds. I don't have time to sit and talk the way I wish I could.' Your niece is a wonderful person. I pray you all are coping well.
:grouphug;
-
You are in my prayers as this is going on 12 days since your Mom decided to stop dialysis.
:grouphug;
-
I'm so sorry for you, and for what is coming. Hard decisions, but ones that have to be respected by everyone. Hospice will be good to her, and your family.
-
:flower; Update 3-2-09 :flower;
So far so good! We have had my Bro & SIL down each weekend and my Niece was here for 10 days to help out. Mom is still putting out some fluid so I hope we will have a few more weeks together. She has been soaking up all of the attention from our visitors and enjoying it very much. She has her hospital bed in the living room so she is right in the middle of everything. I sleep in the recliner right next to her so she can call me if she needs me.
Her arms did start leaking the other day so she has been wrapped up like a mummy but today everything was dry so no more mummy arms. We still have not resolved the problem with her permacath not being removed before they transported her home from the hospital. After watching the hospice nurse change the dressing with her nose on the outside of her mask I told the director that I will be doing the dressing changes from now on. They sent me out about 10 kits, extra masks and some suture kits so I can cut the tegadurm cover.
The hospice doctor has not been out yet because her barn burned down the day she was going to see Mom. She seems to think that she will be able to remove the cath here at the house once I take Mom off of her blood thinner and her INR is low enough. I still think the hospital should come get Mom and remove it then bring her back after it is removed. After all they are the ones that screwed up.
I am looking forward to a couple quiet days before I make the call to my other brother, the 67 year old hippie. They live in Colorado but are almost in New Mexico. This is a half brother that is not welcome to stay at the house. I am not looking forward to them coming to visit. They live in a trailer house out in the middle of nowhere with no running water, phone or electric except a generator. Mom is the one that said that she does not want them staying here because he thinks he can gather up Mom & Dad's things and take them home with him.
Well I just want to thank all of you again for the prayers and well wishes. They seem to be working! Please keep them comming.(http://www.smileycons.com/img/froggies/frog_sack.gif)
,
-
That's good news about your mom. :flower;
Having Visigoths, Huns and Hippies for relatives can be very entertaining, as long as you have a chance to lock up the silver and jewels before you let them in. When my relatives get unbearable, I tried to think of it as a play and just pretend I am in the audience. I hope it goes okay with your brother. :cuddle;
-
This is a very special time for her and your family. It's great when you are given this opportunity to spend time together.
-
Having Visigoths, Huns and Hippies for relatives can be very entertaining, as long as you have a chance to lock up the silver and jewels before you let them in. When my relatives get unbearable, I tried to think of it as a play and just pretend I am in the audience.
I like the way you think! :clap;
-
I'm glad to hear things are going relatively well, given the situation. :grouphug;
-
:flower; Update 3-5-09 :flower;
I woke up this morning at 2AM to :puke;. Mom was too sick to take the oral medication that I have on hand. At 8:30 I was able to contact the hospice nurse to have her send out something else. While we were waiting for the delivery she suggested I try giving her a small dose of morphine to try to settle her down. After I gave her the morphine I was able to get one of the nausea pills to stay down for a little while. She was still :puke; ing so when the suppositories arrived I was about in tears. Five hours of "Help Me" and Help! Help! Help! just about did me in.Thank goodness it only took about 20 minutes to start working.
After she went to sleep I was able to grab a short nap. The hospice nurse was already scheduled to come out today. When she was here Mom could not stay awake. The good news is that she has no fever. The bad news is there is a bug going around and one of the hospice CNA's might have brought it to Mom. My SIL was also having problems on Sunday. I am going to be a little upset if I end up catching the bug too. That is all I would need :banghead;
Time for the nightly check in calls so I will catch up again later.
EDITED:Fixed smiley errors - removed picture link - Sluff/Admin
-
:grouphug; :grouphug; :grouphug;
-
I am praying that the bug does not catch up to you. :grouphug;
-
Thinking of you Auntie V - best wishes to your mom too. :cuddle;
-
You are both in my prayers :cuddle;
-
Boy, when it rains, it pours, doesn't it? I hope she starts feeling better soon. When I can't keep my Phenergan pills down, the suppositories work wonders. And I'm out like a light too, which is a blessing when you feel so crappy. :grouphug;
-
My caring thoughts are with you all the way. Just keep strong. :cuddle;
-
Thinking of you both and sending extra strength to you AuntieV
-
I know how difficult this is on your mom and your entire family! Oddly enough, I am a Hospice nurse, so I am very pro hospice when a person decides that they want no further aggressive treatment. The hospice team is there to make your mother as comfortable as possible and they will try to manage her symptoms as best as they can. :grouphug;