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Post by crimsoncat05 on May 15, 2015 15:46:27 GMT
"Love her, spend time with her, read to her, talk to her, but get out of the caregiver side of it. "
^^^ I thought this part of JustTricia's post was worth re-posting all on its own. I can't even imagine what it would be like to have to go through this ordeal with a loved one, but this sentence struck me. The care-giving definitely is DIFFERENT than being a loving, caring family member, and perhaps getting her full-time care either in our out of your home- would help to alleviate the issue somewhat.
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Post by foolana on May 15, 2015 17:04:45 GMT
Your mother's death should be on her terms, not yours. I do know how hard it is to watch someone you love slip away but you need to stop focusing on what you want and focus on what she needs. You need to put aside your grief until she's actually gone. There will be time for that but you have a limited amount of time to truly be there for your mother and she needs it desperately.
ETA: My 58 year old mother died of brain cancer and she exhibited many of the same symptoms as dementia. I reassured her that everything she thought was right, no matter how ridiculous. It soothed her and made her feel less anxious. The hospice care workers who came into the house were wonderful. I didn't force her to eat (people who are dying don't need to eat) and talked to her about things that made her happy. I told her I loved her over and over again and never brought up the fact that she was dying and never talked about her when she could hear me. She died in peace a little while after I told her it was okay to go. The dying need to hear that you'll be okay after they're gone.
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Post by mom on May 15, 2015 18:32:12 GMT
Your mother's death should be on her terms, not yours. I do know how hard it is to watch someone you love slip away but you need to stop focusing on what you want and focus on what she needs. You need to put aside your grief until she's actually gone. There will be time for that but you have a limited amount of time to truly be there for your mother and she needs it desperately.
ETA: My 58 year old mother died of brain cancer and she exhibited many of the same symptoms as dementia. I reassured her that everything she thought was right, no matter how ridiculous. It soothed her and made her feel less anxious. The hospice care workers who came into the house were wonderful. I didn't force her to eat (people who are dying don't need to eat) and talked to her about things that made her happy. I told her I loved her over and over again and never brought up the fact that she was dying and never talked about her when she could hear me. She died in peace a little while after I told her it was okay to go. The dying need to hear that you'll be okay after they're gone.
THIS. I swear I am not trying to be harsh - but I have walked this road with my mom. Things you are complaining about now are the things you will regret complaining about later. Please, please just spend this time loving on your mom.Don't argue with her...reassure her.....just be with her. I began taking photos of my mom as a way to just be with her. Photos of her hands...her profile...her smile (which was rare towards the end). Photos of the way she would stand at the kitchen sink and look out the window. Photos of things that her disease could not take away. I cherish those photos so much now. For reference, my mom was 63 when she passed from liver failure. Never drank a bit of alcohol in her life. But her liver failed and the ammonia in her body caused her to take on a new personality and have many of the same effects as dementia. It sucks.
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moodyblue
Drama Llama
Posts: 6,183
Location: Western Illinois
Site Supporter
Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on May 15, 2015 18:58:57 GMT
I think you are really angry that your mom is dying. I think you are really angry that she isn't the great mother that she used to be. I think you are afraid to lose her.
The thing is, you can't keep it from happening. And if you really think about it, I can't imagine that you would want the mother you love to be kept alive with a feeding tube and machines, and absolutely no dignity at all. She deserves more than that.
I've been there when decisions had to be made about whether to take measures to prolong life or not. And as much as that's hard to do, I really do understand that sometimes the best, kindest, most loving thing you can do is to acknowledge that there is no more to do - and you do get to a point where you know that the sooner death comes, the better for the one who is dying.
You need to get help for yourself. YOU have to come to terms with the fact that things are NEVER going to get better for your mom. You can't force her to go out and have fun, and she isn't going to be any healthier or have less dementia problems than she does right now today - this is a downward slide she is on, and while medications can help and there will be decent moments - maybe - it is all movement toward the end. You can rage and cry and feel anything you want - but it won't change what is going to happen. The sooner you can come to terms with this, the better.
If you need grief counseling to deal with your sister's death, GET IT. I think that is part of your emotional stress now.
Please also get as much help in caring for your mom as possible. You cannot let the anger outbursts her disease causes prevent you from doing what you need to keep yourself and your father from falling apart or collapsing from the stress. You need to figure out how to manage the stress and how to handle the anger you feel.
I wish you peace - the peace that comes from accepting that we all die, and that dying with dignity and loving care is a wonderful thing.
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Post by chlerbie on May 15, 2015 19:20:46 GMT
I lost my mother to ovarian cancer. She had a DNR and died peacefully. Honestly, as she gets more ill, things are just going to get worse and it's going to be amazingly hard to watch. When I look back now, one of the things I'm SO grateful for is that my mother died peacefully, without a lot of pain or suffering, or pushing tubes, etc. into her body. It's a comfort to me. And I'm glad I don't have a memory of seeing her like THAT--I can picture how she looked a bit more normally and not have the haunting images of things trying to keep her alive when she was ready to rest.
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Post by chlerbie on May 15, 2015 19:27:27 GMT
Oh--and my mother did stop eating, of course. But there were also times she'd crave something, or eat a meal. We didn't push her. Her body told her what to do.
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Post by Zee on May 15, 2015 19:37:01 GMT
At this point it doesn't really matter whether it's Alzheimer's (which no one knows the cause of) or vascular dementia (which is dementia caused by decreased blood flow, and therefore decreased oxygen, to the brain). The end result is the same for her.
I know this isn't easy for you and you took your sister's death very hard, but wanting mom to have fun and eat and not be in pain can't happen just because you wish it. Please realize this. You're focusing on how hard you feel it is to deal with, rather than what her reality is. That is exactly WHY you need help, and why hospice is helpful. They can't cure her and won't pretend to, but they can keep her comfortable and let you take a step back.
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Post by christine58 on May 15, 2015 20:38:36 GMT
Ok yes I did go search for this....how did your mother see Neil Diamond a week ago?? I would think that being at that large of a concert with all that noise etc would be terrible for her...
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Post by foolana on May 16, 2015 1:22:30 GMT
Ok yes I did go search for this....how did your mother see Neil Diamond a week ago?? I would think that being at that large of a concert with all that noise etc would be terrible for her... Is this true?
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Post by christine58 on May 16, 2015 1:33:37 GMT
Ok yes I did go search for this....how did your mother see Neil Diamond a week ago?? I would think that being at that large of a concert with all that noise etc would be terrible for her... Is this true? She posted it a week ago. Highly doubt it is true.
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Post by foolana on May 16, 2015 1:43:01 GMT
I really hate wasting my time responding to people who lie.
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Post by christine58 on May 16, 2015 1:50:49 GMT
foolana It's in the thread about hating living on an island.... There's no way her mother went to a concert...
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Post by tinydogmafia on May 16, 2015 2:15:53 GMT
I'm sorry, I deleted my post because I think I've put too much personal information out there.
Please seek the help of the hospice social worker in getting some respite care.
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Post by txdancermom on May 16, 2015 2:21:31 GMT
Hugs and prayers. I hope you can find some help and allow yourself to be able to rest
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Post by Zee on May 16, 2015 2:43:45 GMT
foolana It's in the thread about hating living on an island.... There's no way her mother went to a concert... Maybe mom was having a good day that day? I don't want to pick her apart. Not everyone has the same experiences day to day. My grandma was often very unpleasant before she died, due to her dementia, but she had many good days too where she got to attend concerts, lunches, and church functions. Maybe her mother wasn't having a lot of pain that day because she took her pain pills. I don't know, but because I don't know, I'm not going to call her a liar based on just that post. None of us knows what's going on with her other than she needs some assistance right now.
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Post by Sassy Sabrina SWZ on May 16, 2015 3:37:35 GMT
I saw that and assumed she meant they were watching a concert on TV.
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Post by christine58 on May 16, 2015 22:55:35 GMT
I saw that and assumed she meant they were watching a concert on TV. You know...I've thought about this all day and thought maybe they were watching it on TV. I was about to apologizing for assuming they were at a concert until I googled Neil Diamond. He was in Vancouver the same night Elannah said her parents went to see him. I really hate being lied to....Her mother is too ill to be at a concert like that. Even without the dementia. I'm sure I'll get flamed but I'm done thinking everything she says is the truth...done with the fact that she "apologized" to me for a very very nasty comment about my mom having cancer. Off to figure out how to ignore her.
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azredhead
Drama Llama
Posts: 5,755
Jun 25, 2014 22:49:18 GMT
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Post by azredhead on May 16, 2015 23:15:24 GMT
I wish I had more words of wisdom for you my pea friend! just hugs! You've been going through so much with your family and making such hard decisions, plus dealing with your own health. It's not easy. It's okay to let someone help. You can't do it all. You need to take care you too. You are not in an easy situation. : (
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Post by *Scrapper*Stamper* on May 17, 2015 2:59:26 GMT
I'm sorry with my nursing background, I absolutely and positively cannot comprehend you wanting your mother in pain. Cancer is extremely painful, feeding tubes are painful. I would never do that to someone I loved. Never. I cannot understand wanting someone to suffer just because I am not ready for them to die.
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theshyone
Pearl Clutcher
Posts: 3,411
Jun 26, 2014 12:50:12 GMT
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Post by theshyone on May 17, 2015 3:53:59 GMT
I want to keep my mom alive by whatever it takes. I let my sister die in my arms and while it was peaceful I can't do that again. Sister had a DNR so there was nothing I could do. I was a DNR witness and I won't do that again. It is just my personal beliefs. It doesn't make them wrong or right. They are just my beliefs. I'm sorry you are so exhausted. If you don't look after yourself first you won't be able to look after anyone else. the above bit I quoted: your mom is going to die no matter what. Whether it's peacefully with no intervention at all or with every single intervention in place. The end result is the same. Death. You are being selfish wanting to keep her in pain, confused, unhappy. It's only for your benefit you getting her tubed and stuff. Big difference between life and living. I have very firm views on this now. my family knows what my wishes are and know I'll come haunt them if they don't follow them. Every single person from a teen able to make the decision on up should have these things written out and in place. I was stupid not to have had it earlier in my life. Death does not scare me, it's a better place than here. I hope ops you go back to hospice and try again.
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Post by Spongemom Scrappants on May 17, 2015 12:53:35 GMT
I read the new posts on this thread each time I check into 2Peas. The whole thread is disturbing. There's way too much arm-chair analyzing going on here. Some people are enabling her while others are antagonizing her. And all the while, no one really knows who we are dealing with. If Elannah is anywhere near as fragile a personality as comes across in her many posts, I am certain that threads like this are not doing her any good.
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Post by Sukkii on May 18, 2015 10:51:28 GMT
I have been thinking this over since the first Post. Elannah what you have said about your Mum and what you want for your mum just horrifies me. My mum got infected with cryposperidiam (SP) that made her very, very sick. She had also undiagnosed cancer but had an appointment for tests. Everything happened so quickly with mum. She was tested and diagnosed with a lot of cancer on the Thursday, I got home to be with her on the Monday and my siblings and I made the decision to let mum go. She had told me never to keep her alive, and always to pluck the chin hairs!. We made sure mum died with dignity, just the way she wanted. Mum died early hours of Friday with my sister and her son beside her. I had been there but I had to go home to dad. My older siblings were waiting for me to come home. I felt it was my responsibility and I asked for a MacMillan nurse to ease the pain and divided my short time between mum and looking after dad. He was losing his best friend and I had to think of him as well. Mum died peacefully during the night four days after I arrived home. I was with dad and my two brothers came in the morning to help me tell him. I stayed with him for a few weeks even though I had a husband and young kids in Singapore.
My dad died 5 months later. I had spent one month with him and I had to extend my stay in Scotland for his funeral, I was devastated, I had lost the two people who were the best people I had ever known. I was an orphan. I lost so much in that five months that I really didn't think I could cope, but I did.
My only thoughts during this terrible, terrible time was how I could make my mum and dad comfortable in their final weeks. I am offended that everything is about you, but as your signature says it is always about you, only you.
I think you are an attention seeker. You posted about a broken finger weeks ago, now it is a broken arm. You also posted about crayons and markers. If you are unable to write why would you need them?
Have you considered your dad in all of this? He has lost his wife, he is elderly and needs a strong daughter to help him through this. Not a blubberling mess who falls down and wont sleep.'
I have invested way too much time thinking about this. I am very upset that someone can think that prolonging life by feeding tubes and ventilation is a good way to keep a parent alive.
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Kerri W
Pearl Clutcher
Posts: 3,772
Location: Kentucky
Jun 25, 2014 20:31:44 GMT
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Post by Kerri W on May 18, 2015 12:00:09 GMT
I read the new posts on this thread each time I check into 2Peas. The whole thread is disturbing. There's way too much arm-chair analyzing going on here. Some people are enabling her while others are antagonizing her. And all the while, no one really knows who we are dealing with. If Elannah is anywhere near as fragile a personality as comes across in her many posts, I am certain that threads like this are not doing her any good. Absolutely agree. I'm generally up on the pea backstory but I feel like I'm either really missing something or there is a whole lot of assuming going on. From the the standpoint of being my mothers caregiver, I understand the stress and I offer you good thoughts. It's a hard place to be in. On the rest-I've got nothing.
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