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My mom and hospice....

yv1214's picture
yv1214
Posts: 72
Joined: Feb 2011

My mom was diagnosed with breast cancer in May ’09, she had a mastectomy and reconstruction that summer. Followed by chemo and rounds of radiation. In October ’10 the doctor advised us that she had mets to her liver and we started the whole process again. All the different chemos we tried always made her very ill. I know that most chemos have side effects but to be honest and give you more context she has always had a very weak constitution and her stomach is very sensitive to medication. Which in her condition has given her alot of abdominal pain, and sometimes shortness of breath. She then developed shingles and had severe pain in her arm where they are located. Therefore, we had to stop the chemo until she recovered. Unfortunately she had been in so much pain and was so weak that she recently spent 9 days in the hospital. After the doctor ran new ct scans it showed that she has more mets in her liver, it seemed to make matters interesting my mother is also triple negative. She was on morphine the entire time she was in the hospital and now she has them for home since nothing else works.

I only have one sister and I am the eldest of the two. Unfortunately she lives in Florida, which then makes me the only caregiver since my mom has been staying with me for the past 2 years (I live in NY). Therefore, I am the person everyone calls when they want info. I am the one that attends every appt, knows which meds work, or which ones don’t. I can give everyone the facts of my mother’s condition because it is the only way I seem to be able to deal with what is happening. But at night when I am sleeping I wake up in a panic because I think she’s going to die right then and there. I run to the room to make sure that I hear her breathing and I pray that she’s ok and it seems like a chant in my head over and over again.

The doctor just shared with my mom and myself this week that there is nothing more she can medically do for her. It was a very hard thing for us to both hear, because we have been fighting this every step of the way. Since she is so weak all of the time her doctor and social worker asked us to consider hospice which because of this great site I had heard of. I am having them come to my house and do in-house hospice. I am not sure if we are giving up so soon because of what the doctor is telling us. Is hospice the right way to go?

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

I've said this before and I will continue to say it: QUALITY NOT QUANTITY. I understand you and your mom want to send this monster from the deep back to where it came from. I wanted the same for my husband. But I took 7 weeks where he was awake and was comfortable, instead of 7 months (or maybe way less) where he was sick as a dog from chemo and rads. The decision was not made lightly, but was my husband's decision with some input from me.

The way I knew hospice was the best for my husband was because of my instincts, the information from his doctors, and my husband himself. This is not an easy thing, but all the information points to ending treatment except in a palliative capacity. Hospice is all about patient comfort, and will extend every possible avenue to you as the primary caregiver.

Please do not think of this as an end of all things. I have read of people in hospice that have full enjoyment for many months, and each experience is unique.

Since it has been so recent, I can almost (almost!) word for word tell you how the intake appointment for my husband went. You can message me anytime if you have any questions, or just need an ear.

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

It is best to get hospice earlier rather than later. They are the experts in pain control and are there for the whole family. If you need something, they get it for you. The best thing is having a number you can call 24/7 if you are worried or just have a question. You are not giving up, you are seeking the best possible care for your mom. If you don't like it, you can always stop it, but I am betting that you find that it makes both of your lives easier. This is a tough time, get all the help you can. You both deserve it. Fay

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

My two friends, April and Fay, have shared very wise advice with you. I will just add one more piece to the puzzle, sign up on CaringBridge. A free and wonderful web site where you can post of your mother's condition and relay info to relatives and friends. Just go to Caringbridge.com and sign up.

I found it immensely helpful during my husband's battle.

Take care. Sending hugs and wishes for peace for you and your mom,

Lucy

tanker sgv's picture
tanker sgv
Posts: 128
Joined: Nov 2010

Hospice is a caregiver for caregivers. They provide you the tools to make your mom comfortable. They know each patient is different so if something doesn't work asked for another solution. I had a rule if I didn't like a nurse or doctor after two visits I would ask for someone new, remember it's ur mom and ur house its not a hospital. Here's a few of the benefits _NO MORE ER visits_ 24 hr Nurse advice that accually answers( I called once cause I had to buy chick products for my mom, and the operater walked me through my shopping list and even told me how to bake a cake .. ) _ no waiting in pharmacy lines _ social worker that calls to see how ur doing _ you even get a bath aid if u want. __ it wasn't until after my mom passed I realized how much more time I was able to spend with my mom as her baby boy instead of her caregiver. I wish u the best its a hard thing to do.

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

hello

Steve entered Hospice at home about one month ago after I sought advice and input here just like you- he entered it at an early stage- I like to call it a Lifestyle Choice!!

Thursday we went out for a late lunch and yesterday, we drove north and actually went out of State, (just) following the wild flowers and after lunch returned home. We have home health aids every weekday, nurse once a week, who told us occasionally we could *call it in*. yes everyone is different. Steve is coming out of radiation fatigue which of course he has now finished. He is stage IV lung cancer with 7 mets to the brain-he will eventually be paralyzed down the right side again now he no longer has chemo- in the mean time-as April says quality not quantity and you can see which we have chosen.

Don't think we haven't fought- we have very very hard, we are newlyweds even at our age-but in the end it was a very calm decision and felt the right thing. You really will know within yourself what is the right thing to do, even if one half of you is still in the wishful thinking stage-we could all do that and all of us have done I am sure. Find your calm centre and you will know what is right for you and your family.

Peace from my home to yours

Lyndsey

yv1214's picture
yv1214
Posts: 72
Joined: Feb 2011

But here I am again trying to deal with more stuff. My mom for the past two days has had mini-meltdowns. She went as far this weekend to tell me that I want her to die which is why I keep her morphine tablets. Last night she cried and told me that she is tired of being a burden and that we are letting her die because we are not giving her vitamins nor nutritional foods. She also told me that it must be hard for us, but its harder on her because she's the one living it. My sister cries at the drop of a hat, and I am so shut down and don't shed a tear. I tell myself I will pencil that in when I have a chance, but right now I don't have time for the pity party. Maybe this is wrong, but its the only I seem to be able to cope right now.

The other thing she did was cancel the hospice care that I had set up for her. She actually answered the house phone and told them not to come. I was floored that she would do this after all the time off I had to take from work to meet with social workers, nurses, chaplains, nutritionists. I am very sad and frustrated because I have done everything to help. My sister tells me not to worry that this is the medication but it’s still hurtful. We know we have done everything, but now I am second guessing myself. Is there anything else for me to give her? Should I speak to another doctor even though she stage IV bc w/mets to the liver, triple negative.

We are trying to have her as comfortable as possible, but nothing I ever say or do is right. I know she's the one with the illness, the one fighting for her life. But I am trying that if these are the last months we all have together there are wonderful and special.

My mother is an amazing woman. I am the person that I am today because of her. She taught me to be independent, self sufficient, and ready to take on the world. I know that I can do anything or be anyone because she told me that I could. I believed in her and she had faith in me to do great things, see amazing places, and enjoy the life that she never truly had. I am saddened that if I ever have kids they will never know her, that my niece will not even remember her since she's so young, and that my nephew will miss his grandma that played with him as a little boy.

I will stop now since I just started to cry and I am overdue.

Noellesmom
Posts: 1293
Joined: Aug 2010

My mom passed away two weeks ago at a lovely nursing home/rehab facility she entered after being in the hospital for the better part of four months.

Mom was having serious episodes of heart failure as well as respiratory failure and the stress of it all was beginning to wear on her badly: she was not quite sick enough to die but not well enough to live, if that makes any sense. It was obvious to anyone who saw her that she was failing physically and not much time was left.

She, too, would have preferred to let go and move on but her body was just not ready. I spoke to the nursing director (who was very available to family members) and expressed my concern at Mom's anxiety level. Being tethered to an oxygen machine was nothing new to her but not being physically able to get out of bed for anything was distressing.

The end result was the doctor on staff prescribed an anti-anxiety medication for Mom. Although we did not use it until the last few days of her life, it was a blessing at that time.

I would suggest this is something you might want to look into for your mom as some of what you are describing reminds me of things my mom said and did close to the end. I didn't talk to Mom before I discussed it with the nurse: when the time came to use the medication, I simply explained it would make her less anxious. That is exactly what it did.

As her breathing became more difficult, the Ativan relaxed her enough not to fight against the terror that comes from not being able to draw a good breath.

Ultimately, it was heart failure that took her from us but she did not have to go struggling for that breath.

Hugs. I know how hard this is for you.

tanker sgv's picture
tanker sgv
Posts: 128
Joined: Nov 2010

I just read your post , I can't respond right now because I know how hurtful it is to hear your mom "ask why r u killing me?" And my brother not be able to handle the pain, but worst of all get so mad at myself for not being able to feel anything , I will post a better responce as soon as I can gather my thoughts . I just had to tell you , you will be in my thoughts, and you are not alone. If u have any question message me, stay strong u can do it because you have to:(

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