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Coping when taking care of someone with mental and physical changes near end of life. HELP

boogie8301
Posts: 1
Joined: Jul 2009

Sometimes I feel like I'm at my wits end. I ask God to please help me because my mom can't get out of bed. I will probably ramble through this but I hope and pray that someone will take the time to read this. My mother has moved in with us. She has been here for 2 months now. I would not have it any other way. I love my mom and promised her I would never let her go to a nursing home or other type facility. She was diagnosed with stage 4 non-small cell lung cancer on April 25, 2009. It has destroyed 4 of her verterbre (sp) and three of her ribs through her shoulder. It is now in her spine and affects her legs and arms. Her husband threw her out on May 26 and of course I brought her here. Since moving here she has basically become bedridden. She was able to get up with my help and the help of a rolling walker and go to the bathroom. I tried to help her get to the bathroom one time and she couldn't move her legs or feet and we both fell on the floor. After crying hysterically, I got wonderful neighbors here to help put her back in the bed and since then we don't try to get to the bathroom anymore. Since not being able to get out of bed anymore her feet have started to become deformed. She talks absolute nonsense sometimes. I realize that her medication can send her somewhere else in her mind. But she will spend and hour "discussing" with me about how to make a box cake. She tried to get me to take her hospital bed apart because she knew it would come apart and be more comfortable. I finally acted like I was doing "something" to the bed so she would be happy. She is with hospice and they've given her "weeks" to live. I realize that noone knows how long any of us have to I don't live by that diagnosis. I have not told her that they said that. I haven't been out of the house since she got here except to go to the dr once and to the grocery store 2 times. Each time she begs me not to be gone long and hurry back and it takes 1/2 hour just to get out of the house. When I get back she tells me about what the person who was sitting with her did while I was gone. Which are whole stories themselves. I feel guilty for thinking that I just want this to end but sometimes I get so tired. I try to remember that she can't get out of bed so she is more frustrated than I am. People say how strong I am but I don't feel strong. How do you tell when it's the cancer talking or the drugs or is she just "out there somewhere"? Does any of this make sense? Why won't anyone give you more information about the everyday kind of things that go on? We've been through radation and chemo and they say there's nothing else they can do for her. I try to make her happy and we've always been VERY close but sometimes I wonder what in the hell did I get myself into. Does that sound mean? I don't won't it to. I love her so much. I just don't know how to help sometimes. They say not to argue with her so I try not to but sometimes it's like she wants to argue. And sleep? No set time or reason. Anyway, thanks for letting me ramble. I've read many postings here but been unable to find anything like this. How do you live with the everyday feelings? Everyone else talks about how they're in remission or going through chemo or radiation or continuing treatment in some way... What happens when treatment is through and you're just trying to make them happy and comfortable until they pass???? Terri Loves Mama

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

is concerned, does it really matter whether it is the cancer, or the drugs, or just her being 'out there'? It is what it is and must be dealt with regardless of where it comes from.
My mother also struggled with mental issues in the final months and it was only a few weeks before she died that she was 'officially' diagnosed with senile dementia. Which could have been brought on or fueled by the many drugs she was taking, or the emotional stress of her illness, or...but was probably a combination of all of the above.
I found it easiest for myself, and as facilitating as anything else for her, just to converse as if everything she said made perfect sense. My replies to what she said did not seem to matter much to her as long as my attitude was not argumentative or abrasive. Even when I had to try to convince her to do something she didn't want to do, it did not help to try to reason with her about it, so I usually just said, 'yes I know you feel that way, but Dr. So-And-So (whose opinion she respected much more than mine) said this was what we needed to do today.'
As for sleep patterns, the only reasonable answer is to get some kind of help and support from others so that you are 'off duty' part of the time and can have a chance to refuel. The carer deserves to be cared for too.
I commend you for your commitment to your mother.
God bless.

rwagner
Posts: 11
Joined: Jul 2009

I hope you find the strength to hang on and continue caring for your mother. You are an amazing daughter. I admire your commitment to her care and your deep and abiding love for her. At the end, you will know that you did all you could do and you'll have no regrets.

My dad has stage IV melanoma, which has spread to his brain and is causing him confusion and destroying his ability to function mentally and physically. He does not have long left. So, I know the heartbreak of the slow loss of a parent like this.

I can recommend an interesting book called "My Stroke of Insight" by Jill Bolte Taylor. This is her own story about having a catastrophic stroke from which she ultimately recovered. What may be useful to you is how she describes the time when her brain was severely damaged, so that may help you understand what your mother is experiencing. She has advice for people who provide care to patients with any kind of brain functionality issues. Her advice has been immeasurably helpful for me in accepting my dad's condition and helping me know how to show my love for my dad and stay strong and positive.

I hope you find some peace where you are at.
R

sally72
Posts: 25
Joined: Jul 2009

my husband has bladder cancer and is given short time . i also believe no person can say how long--it's all in god's hands . i am at the start of caretakeing and crying alot . i don't try to hide it from him . he's crying too . we have had a loveing marriage and also hard life experences together that actually pushed us ever closer not apart .

the daily emotions are more like moment to moment and i get frustrated .... it appears to be with him but truth be known that it's his cancer i'm in a rage at not him ,. it helps me when i remind myself hey it's his cancer .

i have been told to not feel guilty for needing a time out break and getting out of the house when a hospice person is here will help me to feel less pressues . i feel guilty when i find i am enjoying something but also have been told that is normal . getting some time does help when i get home i feel better and have something new to chat with him about . so in a small way he's getting some new stuff in his life . i hope he will still be able to get out with mike his casemanager or a hospice person for a short ride to the beach which he loves so much .

i understand your mom is more incompacitated by her cancer but you do need to take some time out for yourself and not head into burn out . by doing so you'll be stronger for the times she really needs you and you won't be so exhausted . it's not selfish to be frustrated and want time to rest . it's normal ....

i grew up watching my grandmother get progresivly sick with diabeetes and my mom needed to take more and more care of her ... she went into burn out and it effected her for a long time after my grandmother passed on . mom didn't take time to rest and was always busy dealing with her own mothers declineing health ... yah i feel guilty for takeing time outs but from my experences watching my mom i realize by takeing a break i will feel better and stronger for when i get back home and have that rush of how much i love him and am better able to help him.

SonSon's picture
SonSon
Posts: 186
Joined: Jul 2009

My mother-in-law (metastatic breast cancer) is declining, too. She was using a cane reasonably well (teetering around and nearly tripping herself with it!) but after two incidents yesterday and this morning (one with finding her on the bathroom floor) I insist that she uses a rolling walker (which she cannot stand with except for me boosting her up).
**sigh**
I am basically alone in her care (husband travels 2 or 3 weeks coming home only for a few days) and sometimes I really resent what I am having to do. I start to think about all the inconveniences, expenses, sacrifices, sleepless nights etc - but then I go back to what this must all be like for her. She is such a proud person. It is really hard for her to have me help her in the bathroom, dress her, bathe her and many other things. I even have to feed her.
Yes - I sometimes wish it were over (I wish she would just get better but have to face that it will just get worse). You are not bad for that. We get tired and our loved ones sure do not deserve to suffer.
Your mother's case sounds really bad. Makes me angry reading about her husband throwing her out - I don't know the whole story, but what happened to "in sickness and in health"?
You really have the strength - reach out to someone, anyone (we're here!) to support you. Perhaps it may help to remember one good memory of your past with her and then visualize her like that.
((((((((((((TERRI))))))))))))))) -that's a virtual hug

DAme1
Posts: 1
Joined: Aug 2012

I was caregiver to my late significant-other. We aggressively battled his colon cancer for 3 years before he passed. In home Hospice was a God send... as much for me as him. Especially in the last month of his earthly life he would say the absolute craziest stuff! Hospice helped me understand that this is quite 'normal' because as end of life approaches, what might typically be considered dementia is actually the patient re-learning the language of the other side. They are transitioning from the earthly world to the spirit world and the language is different.

Knowing this is helping me (somewhat) understand my current husband who is approaching end of life due to prostate cancer w/ mets to bone and lymph nodes.

The truth of matter is, terminally ill patients are incredibly selfish and it's damned aggravating!

It is painful for us to watch them childishly refuse to do the smallest things (that they are still capable of doing... like elevating their feet to reduce edema) to help themselves be more comfortable. They don't want to be mothered and nagged even though they act like spoiled bratty children. I understand that they grieve for their loss of control... while watching them refuse to exert what little control they still have for their own comfort.

Maybe they're just tired, ready to move on, and this is their 'passive' way of speeding end of life.

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