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I need opinions on hospice care for my mom!

Charlottehapp
Posts: 6
Joined: Sep 2015

So my mom is 51 and she has had breast cancer since 2001. the cancer metastasized to her lungs about 6 years ago, and we recently found out that it is now in her brain. She had a total of 7 tumors, and they removed one. Since August 1st she has been in the hospital 3 times. The first time they did an emergency surgery to remove the 1 tumor. Then she did WBRT for about three weeks one treatment every day (except for the weekends of course). But then she started throwing up again and she fainted so I called 911 and they took her to the hospital and by the time I got there she was almost in a coma and they had to put her on a ventilator and all of it was caused by to much spinal fluid build up. So they put a permanent brain shunt in. So she came home (she lives with me, my husband and children) , and of course this whole time she has been taking a break from radiation. But she is VERY mean, and she basically acts like she has the beginning stages of dementia. So basically her personality has completely changed and she doesn't act like my mom anymore. And none of the mess she is taking should do that to her. And before they put the shunt in she was NOT like that. But anyway, this past Sunday she fainted again so of course I called 911 and they took her to the hospital, and it all happened again. She had to have a ventilator put in and she was Basically unconscious. This time though, the doctors don't know why it happened. her shunt was working properly, no fluid build up, the masses haven't grown, everything looked "normal". But she's awake now and her personality I still the same, she's very mean. And she's very difficult to take care of because of that. 

 

But my question is, is all of this worth it? Is finishing WBRT worth it? Or should she do hospice? I don't know what to do anymore. She thinks that she's going to live another ten years but I know that's not the truth. Of course I haven't said anything to her about that. I'm just worried that the quality of life isn't there, all she does is sleep and if she's not sleeping she's sitting there on my couch yelling at us about something that makes no sense. When ever you ask her a question she rarely answers it, normally she'll just talk about something else. 

I just know that if it were me I wouldn't want to die mean, or live the last months of my life in and out of a hospital. I know it sounds selfish but I don't know how much more I can handle. I've had to completely stop my life to take care of her, and like I said it's really hard to take care of someone who is just constantly mean especially when she's mean to my children. I can handle the meanness but my three year old doesn't really understand. And my 13 yr old doesnt leave his room anymore because of her. I can't afford assisted living, I'm already struggling with money as it is because I'm trying to keep her things paid for. I just don't know what to do anymore. I feel very stuck. 

 

 

MyPops2015's picture
MyPops2015
Posts: 1
Joined: Sep 2015

Charlotte,

let me start by telling you that you are an amazing daughter. Your mom is very lucky to have you. 

I joined this site about 30 min. Before finding your post and after reading it, I was in tears because it was so nice to feel like I wasn't alone.  I feel like I will hopefully shed some light for you as well as give you some help with your questions. 

Around 12 years ago my dad was diagnosed with CLL Lukemia and he started treatment within a day or two, to the best of my memory. my dad has for the last 12 years handled this horrible disease extremely well. I think back to the begaining of his fight against cancer and I remember how scared we all where. I was 27 years old and felt like I was going to get robbed from having a long close relationship with the greatest man I have ever known. I always remembered that time in my life as being so scared, very sad, depressed, and quite angry. quickly after his treatments started he got back to his old self. My dad did so well and thing where going so great that I feel like we all as a family new he had CLL but we where going to beat it and we all just put the scary thoughts away. for the first 12 years of my dad fighting cancer, he was as healthy as a horse and you would had been shocked if I told you he had cancer as little as 4 weeks ago.  (This is where our stories become very similar and I really hope I am helping you in some tiny way with writing this) 

My parents came home from a fairly long motor home vacation the weekend before my son started school. We all got together the day after they got home and had dinner. My dad was  his normal upbeat, funny, energetic, and happy self. That dinner was on Sunday evening. I got a call from my mom on Tuesday morning. She said that he was complaining of an extremely painful headache all day on Monday. The reason she called me was that for some reason this headache was giving all the signs of a severe stroke minus any sagging of the face or  paralyzing  face features. So by mid day he had been admitted to the hospital. It took another day or two before finally getting actual proof what was causing all of this. They did a spinal tap and found that his cancer had spread to his spinal fluid and brain. By the time this was discovered I truly feel that he had  deteriorated so rapidly such a horribly week state know who I was at that time. He was not eating and not really talking. We got some yes and no awnsers from him and that was a struggle. After his first chemo treatment and steroids I felt like I had my dad back. He was even able to go home a few days later. His eating improved a bit, but know where close to what he normally ate. When he came home he was esily agitated at stuff that would never have bothered him before. After he was home for a couple days he very rapidly deteriated again. He was right back in the hospital and again he was now not responding to us verbally and really couldn't move or lift his legs and arms. He was very incoherent and completely  on able to do the simple list of tasks. He also really struggled with memory. After another treatment and more steroids I thought I had my dad back tell I saw how angry and agitated he was. I literally in tears apologized to the nurses for how nasty he was.  I quickly learned that I did not get my dad back like before. Over the next few days he got better to the point we brought him home. when he was at home this second time he needed a lot of help. He also was still struggling to say the thing he wanted to and his memory was not real good either. He had only been home for a few days when he went right back to the hospital. 

come to find out there are a few ways that if there is family history of  dementia or Alzheimer's they can be jump started like a light switch. Even with no prior sign of it. my dads doctor, mom, and I desired to stop all treatment and mess to see if there was any reactions from the pile of meds he was taking. He has also shown no sign of wanting to eat or drink in almost a week now. 

Dad was moved to a full care home yesterday and is getting care from Hospice. I am actually surprised he is still here. He actually looked and sounded better yesterday then he has been in a few days.

Hospice is not you pulling the plug. The ladies we have from hospice are amazing. They are there to make sure that he is as comfortable and happy as he can be tell my dad looses his fight. Hospice does not speed death up or slow it down. All they do is try to make them comfortable when there is nothing else the hospitals can do. 

My dad has lost an easy 40 pounds sense this started a month ago. He also has full blown dementia on top of the cancers that have been killing my dad. I will leave you with this last thing. I personally am so so exhausted not only physically but probably even more so emotionally and mentally. His need for care was at a point that it far exceeded what my mom and I where capable of giving him. 

There are things out there that can help people that need help for a family member like your mom. I wrote down questions on a note pas then when I saw the doctor he helped with what I needed to know. I am sure that when your mom was healthy she would have never wanted to cause stress or heart ache in your home not to mention the effects on your relationships within your home. Husband, kids, dogs, cats....we all feed off of the vibe or energy that we get at home. 

 

Anyway,I'm so sorry I had know idea I wrote a novel and hope you reading it wasn't a complete waist of time. please let me know if you want to talk some more in the future or at min. Please keep me posted on how thing go for your family. These are all extremely difficult decisions to make, but they can't do it anymore. So with every once of love and compassio we are forced to what we hope is the best thing for not only our sick family member, but also the rest of the family.

i will be praying for you and your mom along side the prayers for my dad. 

Charlottehapp
Posts: 6
Joined: Sep 2015

Thank you, I'm sorry that you have to go through all of that. It's really hard. The same goes for you if you ever need someone to tak to. 

 

My my mom is currently back in the hospital, when I originally wrote this post she had only been to the hospital 3 times but since then she's gone back 2 more times. She finished her radiation treatments and two days later had to be admitted into the hospital. They did an exploratory surgery where the tumor cavity is (the one they removed) and found that she has a staph infection. So they started weening her off of the steroids because they were hiding the fact that she even had an infection. So through an infectious disease Doctor she has to be given antibiotics intravenously for 6 weeks twice a day. So they released her from the hospital on Friday and she went back on Sunday because her oxygen levels were low and she was vomiting. But this time nothing caused her oxygen levels to be low, no brain swelling, her tumors on her lungs aren't big enough to cause a breathing problem, she's not active etc. her health has definitely deteriorated since I posted last. She no longer can go to the bathroom by herself, some one has to pick her up and put her on her chamber pot, she can't wipe herself, she can't speak correctly (she slurs like she's drunk) she can't open her right eye and when she does she can't focus her eyes. she falls asleep when you're talking to her. she isn't eating still. 

 

Half the problem I'm having is that she's vet in denial still, and her doctors just don't say anything. They just keep telling her she's going to be ok. So she refuses hospice, and she thinks she's going to live another 30 yrs. even though she is clearly not improving. Radiation did nothing for her and the antibiotics she's on got her brain swelling to go down, but she still is in worse condition than she was before. her palliative care Dr. Has talked to her about hospice but she doesn't listen to him what so ever. luckily though she got approved for a skilled nursing home and that is where she will be going, which in her mind she will get better there. But I just don't see that happening. 

 

 

Anger
Posts: 5
Joined: Nov 2015

i am in a similar situation With my husband. I got home health to come in for help.  My husband and I decided early on that hospice would be the best way to go. He did not want our small grandchildren to see him angry and confused. Their emotional needs came first. Best decision for us!

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