My mom has less that a week to live

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loveYouMom
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/6/2009 10:21 PM (GMT -7)   
Hi! My name is Lisa and I live in Washington State.  I am completly new to this.. But Where to start... My mom was diagnosed with end stage liver disease in December after years of many health problems. After the diagnosis we were told 5 years. Well she has slowly taken a decline and Last Friday May 29, her amonia levels were through the roof and she basically just went in to a coma. On Saturday her kidneys had stopped working and they told us there was no chance for her and we were just waiting for her to die. The whole family came and said their goodbyes and we were planning a funeral. Then Sunday night she started producing urine. By Monday she had started talking. Then Tuesday she is eatting scrambled eggs and walking 40'. We knew that it was only a tempory thing but we all got to actually talk to her and tell her the things we never said before. Then by thursday she was slipping. At that time the social worker in the hospital as well at the doctor suggested Hospice. I wasn't sure but after talking to them I found this to be great. Yesterday my mom was brought to my home with hospice. This is the hardest thing I have ever had to do. I am scared, sad, mad, angry you name is but this is my moms last wish. She wants to die at home. I don't blame her, its just very hard on me the care giver. She wont eat, she doesn't want to take any meds except for her pain pills and I know we are just sitting here waiting for her to die. i am still not sure how I feel about this all but it sucks so bad. I don't want her to suffer anymore but I am not ready to let her go but I know i have to. All she does is basically sleep with maybe a 2 or 3 work answer if you ask her a question. I just love her and make sure I tell her this every time I walk out of the room. I just want her to be as confortable as possible. Mentally I am exhausted as well as physically. I sleep maybe 2 hours but I am up checking on her and giving her meds. Since she just started hospice yesterday I haven't talking to anyone on how I am dealing with this all. I am the type of person that knows I have to deal with something. I do it and then afterwards I try to deal. I just don't know what to do. My husband, friends and family are trying but there is nothing that they can say. The pain is just to deep. Thanks for listening and any advice would be great.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/6/2009 10:41 PM (GMT -7)   
Hello Lisa, Welcome to HealingWell. I am so sorry that you are going through this with your mom. What a wonderful daughter you are. To do what you are doing for your mom .....not everyone can do. I know that it is so hard on you but you can get through it. I did for my husband and 2 years later I am so glad I did. He had had enough of doctors and hospitals and to have him home during his last few months .....I wouldn't trade them for money or love.

We have so many wonderful members who have walked in your shoes or are going through it now like you......

One thing I did to get through it was take walks around our property and pray a lot. I didn't have anyone but this forum to talk to about it that understood either. Not even his family. You do need to figure out what you can do for yourself to calm you down. Whether it's walks, reading, bubble baths........what ever. You need to be able to try to get your mind off of it for little bits of time to help you through it. My granddaughters were a great stress relief for me also. And when I found this forum.......I cried when the first person answered my post......I was such a relief to communicate with someone who actually understood my fears.

Post whenever you like.......that's what we are all here for....each other.

Please read our educational posts at the top of our Hepatitis forum under Hepatitis Resources. You will find a lot of good information about this disease.

Again welcome........thoughts and prayers........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 6/7/2009 12:04 AM (GMT -7)   
Hi Lisa
So sorry to hear about your mom. I can understand what you must be going through. I must say you are really brave and adorable daughter. I can feel the pain. The moment I read your post, I had tears in my eyes. I faced similar situation, when my brother-in-law passed away on June 19, 2001 due to Hepatitis, cirrohis and multiple organ failure. He became unwell in December 2000 and on May 15, the doctor told me that he may not live more than six months. It was painful. He went through hell and within one month passed away. My sister was hardly 38 that time and with two sons of 11 and 12 to look after. First of all it was so difficult to tell her that her husband is about to die in another half an hour and then to inform her.

Well you must relax, try to meditate, think of good memories which you can cherish after your mom, the times you spent together, and the fact that all of us have to leave one day. Only the person who has lost can feel the pain and the grief. Have faith in God. At times miracles do happen. I know of people who were in coma for months, and then came back and lived for years.

Take care. Be brave. We are all praying for your mom.

PS
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/7/2009 12:30 PM (GMT -7)   

Lisa, welcome to our forum.  I can feel in your words the pain you are going through.  I know it's unbearable.  It's good that you know you have to find ways to cope.  There are many people here who are or were caregivers.  We really have more caregivers than patients.  So the majority can relate.  It's much worse on the caregiver/loved one than it is on the patient, I think (I'm a patient.)  We do sleep a lot.  I wouldn't worry about your mom taking any meds except ones for pain and meds that will make her feel a little better, such as diuretics.  The Hospice social worker can also come to the house to speak with you, if you request it.  The nurses are also great listeners.  You will be glad that you honored your mom's wish to die at home, regardless of how difficult it is right now. 

Please come here often and post about your feelings, etc.  We are always here for you.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 6/7/2009 2:41 PM (GMT -7)   
Hi Lisa and welcome to Healing Well. I am so sorry about your moms failing health. Everyone in this forum can relate in some form. The kindest people around are members here and hurt for you and with you. I can understand exactly how you feel right now. I lost my mom in Nov 2007. She suffered terribly and while she suffered we all suffered with her. The thought of losing her was overwheming for me too. I was sad, angry, confused, and felt lost too. What's worse is I am an RN and I felt guilty because I couldn't make her well. I think losing my mom was the most painful loss I have ever endured and I pray that I will never have to go through anything that traumatizing again. I will say in all honesty that time has helped. I still cry sometimes but not very often now. Rather; we as a family talk about fun times we all had with her. The memories have given us some peace. When I came to grips that the end was near my primary concern was keeping her as painfree as possible. I encouraged her to take her pain pills as often as she could have them. Finally, the pills no longer kept her from pain so my dad admitted her to a hospice facility. Believe me when I tell you that it was a God send for us. They kept her completely and totally pain free. ASfter a few days she passed away quietly with my younger brother and I at her side. I once told the others on the forum that my mom always said that life was one big adventure. You never know what lies ahead so don't fear it. She taught us that even death was an adventure. Thinking about those words gave me some comfort. We cry for those that we lose not for them so much but for us that remain. You are doing everything you can for her and whether she can communicate it to you or not she is grateful. Keep your head held high honey. She loves you and knows what you have done for her. Take care of yourself too. Take naps, long baths, walks, or whatever works for you. You are facing some difficult times so rely on your family and friends to help you thru it. Talk freely, and know that we are all here for you.
 
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


loveYouMom
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/8/2009 12:45 AM (GMT -7)   

Thank you all for responding. I am trying my hardest. It is just so hard to look at her so weak and cot her usual self. I am so thankful for the good memories that I do have and will always have. I am noticing at this time that the hardest time for me is at night. After everyone has gone home and my husband is sleeping, I just wonder the house, water my plants and think and cry. I am just not ready to let my mom go even though thats what needs to happen. I think tomorrow will be better, My mom entered hospice on Friday and they brought her to my house and then left. No one showed me how to turn her, what I should do to help her or anything. So this weekend has been hard. I have lots of friends and family over helping me but its hard. Tomorrow people from hospice are going to come and then I should have someone to talk to. I am thankful I found this place. When I decided to log on tonight, I didn't think anyone would have even read my post let alone have 4 people respond. My mom is only 50. She has been sick for a while but she was still such a fighter and I didn't think she would be leaving us so soon. I will have kids in the next few years and I am not going to have her to help me or give me advice. She is not going to have the joy of seeing her grandkids that I know she has wanted for so long. I am just so sad. My grandma (my mom's mom) died 4 years ago of a heart attack in her sleep so we were never able to fully tell her good bye. I know she is above watching but I dont want my mom to go yet. I just am not ready. For anyone reading this I am wondering if you have let someone die in your home. I am really having a hard time. I was able to see my grandma in her bed after she had died and I never went back in her bedroom. Now I am wondering if I will feel the same way with my mom or if I will feel better because I honored my moms wishes. I just don't know. I only have a 3 bedroom house and I just don't know how I will feel after she goes. Any thoughts feelings or opions would be great. Thank you guys again. It felt so great to come on her tonight and see that there are others who understand.

 

Lisa


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/8/2009 10:44 AM (GMT -7)   

I can't add much to what has been said, except to suggest your asking Hospice about a hospital bed for your mom.  Since they are adjustable, it makes the care a little easier.  Also, you will not have the memory of her dying in one of your beds.  I hope that Hospice will be a great help to you in dealing with your mom's illness and her ultimate departure.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


bratnewton
Regular Member


Date Joined Aug 2008
Total Posts : 131
   Posted 6/12/2009 8:21 PM (GMT -7)   
Hi

My mom died at home as she wished. This was 5 years ago this JUly, although it was for other reasons, COPD, Emphysema, heart failure etc etc. I live in Nevada and my mom lived in So Calif at the time. My dad called on July 3rd and said the hospital was sending her home to die and those were her wishes too. I immediately jumped on a plane and went to her. I did not realize my mom was as bad as she was, but that is besides the point. Anyways, I agree with Connie about the hospital bed. When I got there, my mom was in her cozy bed, where she really wanted to be. But it was so dark, small and out of the "living area". I told my dad we should get a hospital bed and put it right in the middle of the"TV" room in front of the big window. Actually it was a sliding glass door. This way she could have light or dark and fresh air and when she did open her eyes and was aware of things, she would see me or my dad or someone else she loved sitting with her. The hospice people when they came with the hospital bed, set it up , put her in it and then left so I know what you mean about not knowing whats what. She had tons of medication and liquid oxycodene for pain. When hospice nurses showed up, they showed me everything and said just give her the pain meds and keep her as comfy aspossible. The doctors said 24-72 hours to live. Well she lived for another 26 days. She lived for her grandaughters birthday (my daughter) got to see her son and hold him (to which it did not seem like sheknew, but I know she did, and also her next birthday and then passed a few day later. I cried and cried when I spent time with her. I apologized for being such a brat growing up time and time again, I talked and talked and talked and told her how much I loved her all the time. Most of the time it did not seem like she didn't hear me but there were a couple of occasions where she squeezed my hand just a little and broke a tiny smile. She opened her eyes right before she passed and I SAW HER take her last breath. After when they came and took the bed out, it was really hard to look at where her bed had been but knew in my heart it was "OK". As far as her room, I slept in her bed for a couple days and my dad did not touch anything for quite a while but just knowing she is in a better place is very reassuring.
Lik the others, I sat outside when others came by, walked around, cried, prayed all the time to help. Losing a mom, or a parent, is very hard and sometimes traumatizing of sorts. I lost my dad too to cancer and I was by his side too but at the hospital You slowly but surely get back to normal and I still cry and my dad does too. IT"S OK
Let us know if we can help with anything and God Bless you for being such a WONDERFUL daughter

Karen in Nevada

5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 6/17/2009 7:21 PM (GMT -7)   
Lisa and all who wrote so far,

My friend Mary continues to decline. I can't write about that right now but reading these posts made me feel a lot of love. We can always use some of that!

Thanks.

Joan
Best friend is in ESLD, has HepC and cirrhosis. 


2young2die
New Member


Date Joined Jun 2009
Total Posts : 4
   Posted 6/17/2009 11:38 PM (GMT -7)   
Hi Lisa,
  I am totally new to this as well.  In fact I just registered as a member about an hour ago.  But all the feelings you describe are so familiar.  My mother died in my arms from lung cancer in March of 2001.  We were in her cherished home.
  There was only 2 or 3 months where she needed to be checked on frequently and meds throughout the night, but I still don't sleep through the night.  Everything went just the way she had wanted it to, including the DNR order, and I think that's the greatest gift I could have given her; to be with the two things she loved most while passing - me and her home.
  This is such a tough time for you.  The best advice I could give is to go ahead and experience your feelings.  Be careful how you express them them, but do experience them.  And spend time, when you don't have to be the caregiver, to just sit and hold hands.  It helps to acknowledge the reality of the situation without getting caught up in the sadness.  Good luck.  You'll both be in my thoughts and prayers.
2young2die

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