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Mom has dementia which is getting worse. She has CHF and her legs and ankles are swollen and weepy. The cardiologist keeps increasing her diuretics and changed to a more potent one. He says if this doesn't help she needs to go to the hospital for IV diuretics. The last hospital visit almost killed her. She had to be restrained and had no concept of where she was. She was terrified. She is 90 and living in AL. We actually had to move her to AL becauce she declined so much after last hospital visit. Prior to that she was in an apartment with daily help and was relatively happy there. The doctor said if I refused to take her for the IV diuretics the only other option is hospice. Mom is miserable and wants to die. She says so constantly. I don't know what to do. Do I put her in the hospital where I know she will be terrified and decline even more to alleviate the swollen legs, only to extend a life she is miserable in? I dont know how to make these life and death decisions. Has anyone else struggled with this decision? I swore I would never take her to a hospital again. Please help.

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I am so sorry about your mother.   Another trip to the hospital sounds awful.

If I were you I would use hospice. I think your mother is telling you what she wants. Hospice was really great for both my father and MIL.
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"Mom is miserable and wants to die. She says so constantly. I don't know what to do."

It seems pretty clear. The question you need to ask yourself is whether you are continuing for yourself or for her?
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Hospice.
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I think hospice is the kindest route
,
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My mother also has CHF and dementia. She has had two hospital stays where she was also so combative that they had to restrain her. They also did a thorantesis where they took out 2 liters of fluid each time and her legs were also swollen where she was wrapping towels around her legs to absorb the fluid. If you decide to take her to the hospital they will give her something to make her calmer. If my mom said she wanted to die then I would do the hospice.
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After my mother's last hospital stay, her pulmonologist said to me " stop poking holes in your mom". His dad had also died of CHF. I vowed never to allow another hospital stay. Mom had two more relatively good years with palliative care at a NH and a brief stint where hospice made her comfortable. I think that your mom has told you what she wants. Be at peace with her choice.
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Sorry for your mother's suffering - I hate the thought of making life and death decisions as well
If you can, try to quiet your mind as you go to sleep and listen to your inner voice when you wake
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My 85 year old father also has CHF, edema (weeping almost gangrene) cellulitis, vascular dementia, diabetes, urinary incontinence & now he is passing loose fecal matter everytime he pee's, immobile etc, etc. My 80 year old mother is caring for him at home, mostly alone, with twice daily visits from the district nurses. She is killing herself doing this as she has severe RA and now her legs are full of fluid and incredibly painful. Even the pharmacist told me last week that she looks very unwell, but there's nothing we can do as Dad doesn't want to go to hospital again & Mum says she's fine. However, I think & hope that he'll be admitted to the hospital next week as the district nurse has made him an appointment to see a hospital doctor & the ambulance taxi will be picking them up to take him there. This is my crisis that I've been waiting for & it's finally here after a long 4 months. I have the feeling they'll say nothing more can be done for him & just proceed to keep him comfortable. I will agree with hospice care as he has absolutely no quality of life and at the moment everything is delaying the inevitable. But when all's said & done the choice is his alone. All through his life he's been very controlling & stubborn and I don't think he realises what all this caring is doing to my mother or maybe he does realise but his illness is more important than hers. Maybe the district nurses saw that & are trying to get my Mum some respite. I would go with what your Mum wants.
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Your mom made you promise to not take her to the hospital. You saw the bad effects of the last visit to the hospital. Your mom is telling you she is ready for hospice. So personally I’d go hospice and be there with her as much as you can.
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I would go with hospice. Give Mom comfort and love while she passes.
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When loved ones tell me how they feel about end of life issues, I take it seriously and do what they have asked. Watching someone suffer, who will not recover is quite horrific. Is there some reason you aren't inclined to explore Hospice?  Does the doctor say what will happen if she is hospitalized? Will she recover?
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Sunnygirl1, if she is hospitalized they will put her on an IV which will drain the fluid from her legs. The procedure itself sounds pretty easy. If it were not for the dementia it would be a no brainer as it will relieve her suffering. Because of the dementia, a hospital visit will bring on so much emotional trauma. Thank you for your answer. I will make a decision soon.
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If she did not have the dementia and fear of hospitalization it would be worth trying to relieve the suffering.
I have been in the same situation. Having an IV as you know is no big deal and the diuretics work very well by that route. They will also put in a catheter so not problem with bedpans or getting out of bed frequently. She will get alot of relief from removing the fluids but once she is discharged it will probably return.
The last hospital admission was a disaster so why repeat it? the tretment will only temporally relieve the symptoms so why do it.
Mom has stated that she wants to die so why stand in her way. it is not going to improve her dementia or general health.
Comfort care would be my choice so let the experts at hospice take over and keep her comfortable for whatever time she has left. They will also provide a lot of support for you during this difficult time. It is the loving thing to do.
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Love, don't let guilt dictate what you should do; you would not be killing your mom to put her with hospice, only alleviating her suffering, which she says she's had enough of.... God bless, sweetie; I know it's not easy.
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She clearly told you she didn't want to go. Are you struggling with that you think this is dementia talking and not really "her" talking? Consider her overall picture and what her life will be like living with dementia and CHF and whatever other complications that may arise and then make the best decision - for her.
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Sorry for all your hard decisions. Mom has dementia & CHF & if the time comes when fear is all that's left & im offered a choice between a terrifying prolonging hospital stay or a peaceful hospice route, I would choose peace for mom. It's horrible to end up having to make ALL the decisions but especially the big ones. Follow your heart & make the decision & then accept you are making the best decision you know how. In the end as long as you do what you believe is best for her what more can anyone ask.
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I know nearly everyone here has said to contact hospice. My friends mother had CHF and edema and she was transferred to along term care facility and placed with hospice. They are there to alleviate pain and to provide needed care as well as grief counseling for family. Put yourself in mom's place...she wants to go. What is the quality of her life? Not good is it? Even if you took her to the hospital, this would happen all over again. We unnaturally prolong death in this society. Hospice is a god send and an answer to her wishes.
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Hospitals can be terrifying places even without dementia.
I would call Hospice.
They will help all they can to manage pain.
Provide you with the supplies and equipment that you need as well as support for you, your Mom and the family.
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My mom sufferes from CHF , when her fluid retention gets really bad , her PCP sends her to the ER for IV lasix. No hospital admission. Is that an option you might want to discuss with her cardiologist?
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I am so sorry for what you are going through. I know how difficult these decisions are. I am sharing this in hopes that it will help. I actually had something called a DNH for my mother in the excellent nursing home where she was. (do not hospitalize.) She had pneumonia at one point that they ended up effectively treating at the nursing home and she got better. Months later when I was leaving for a vacation they called me that she was having a seizure and I was pressured to move her to the hospital to treat it because they were unable to stop the seizure at the nursing home. This just prolonged her life uneccessarily and after a hellish week in the hospital she ended up back in the hospice section of the nursing home where she passed away peacefully. Hospice care is incredible for both the patient and the family. Best of luck to you. What ever you decide it is the right thing.
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In my experience hospice would probably be wiser and kinder for her. If the idea is too scary for her, or you for that matter, she needs to know that she can be discharged from Hospice at any time. That helped with a woman and her family who had a really hard time deciding what to do. She was on hospice for about 2-3 years and found peace and comfort before passing on.
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My story is your story. After my mum's last visit to the hospital (which was a nightmare) I am abiding to her wishes to die at home. I have Hospice coming to the house and I now focus on my mother's needs for her comfort. As far as I am concerned, the ultimate show of love to a parent is to support their last wishes. Sending you hugs.
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Many IV therapies can be done at home by an RN. They work for visiting nurse associations. She can start an IV and give the Lasix right there. She can also put in an indwelling catheter. It's (usually) easy enough to put in while the patient lays on the bed.
You could even be taught how to remove it. (easy)

Her legs can't be comfortable when they are that swollen and weeping, so it would be a "comfort measure" not a life saving measure.

Would you be willing to look into this 2 hour procedure being done at home?

I'm not advocating for this option, but just want you to have ALL the options before making a decision. That way mom could stay home during the IV infusion, most of the urine would be released within a couple of hours and the catheter could be removed before the nurse leaves. You'd have to check to see if she could be on hospice at the same time, but it could be considered comfort only treatment for the patient.
(Meaning you are not trying to "get her better" with this treatment.)

If she wants nothing to do with any of it, even in her home, invite hospice to care for her. Look up hospices and their ratings on the Internet.
I've found huge differences in hospices from reading this board. The one I work for is great.
Good luck and God bless.
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It was scary for me too.

Here’s what I wished someone had said to me: Try not to think of it as a life/death decision. Think of it as a way to improve quality of life and reduce pain/suffering for someone you love.

With my Dad, I struggled with the shift from ‘curative’ to ‘pallative’ which hospice meant. But I found the change in medical designation suddenly brought a lot of help I’d been struggling to find and was exactly what was needed. He was able to continue to be at home, with no more trips to the hospital to make him worse, just for an IV which could be done at home. 

There is a reason so many of us are saying Hospice. Although it can be a scary word, people can live a long time on hospice.  

Stay strong, our hearts are with you.
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I'm surprised there is no mention of Dialysis - you can only do so many diuretics.

I purchased a chair that does Zero Gravity and it took the swelling out of my DH's legs - and he sleeps through it - ZG is a very comfortable position.

When he had "weeping skin" it was from too much saline drip. I almost lost him Christmas 2015 and his skin was weeping. One week on Metalazone and he dropped 28 lbs of fluid.

I would go along with Hospice mainly because something isn't adding up here. You cannot keep increasing diuretics without addressing the cause.

Is mom in compression socks? That too would help with the swelling - but my $$ is on the chair if you don't want dialysis. I bought a Lift-Sleep Chair but they make a lounger that will also do ZG Position and from day one, I noticed the swelling dropped. I started with the cheap lounger (like for the beach) and when the swelling dropped the first day, I knew he had to have a lift chair that would do the ZG position.

May I ask what you are feeding Mom? My DH is 90% on Supplemental Shakes now and his sodium is very controlled - enough that he has no swelling at all in his legs now. The shakes average $1 each and DH is on 3 daily (on average) and even with the most expensive one I use, I figure maybe $5 daily for his shakes. A little more for the Ice Cream he wants in them and he starts the day with a breakfast of 1 egg, 1 slice bread and 1 oz meat along with a Meal Replacement shake (like slimfast but not). After that, pretty much just shakes with ice cream for the other 2 meals.

Yes, it adds up, but still cheaper than a funeral and he's still with me at 96. I was advised to push the proteins and just give him what he wants.

You can message me through my page if you want particulars.
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I think too many people must have a low opinion of hospice. In my experience for both of my parents, hospice was the most loving, compassionate, group of people I could ever have known. Hospice does not have to be considered as a last minute, end-of-life necessity. If a loved one meets the criteria, it may be months, or as in my dad's case several years before they pass. The support and medical care varies, but when there is a good hospice group coming to assist your loved one (and even care for the caregivers) that is huge. The nurses aide (a male) came several times a week to help bathe my dad. My dad loved this man, and his aide was phenomenal. I know because I spent time getting to know him, too. He treated my dad like he would have been his own father. They laughed together, talked about Dad's past, and even talked sports and weather. There was a genuine friendship that I can guarantee was felt in the hearts of both men. The hospice nurse visited often and helped to manage Dad's medicines (many of these were a covered expense through hospice, and that can really be huge). We asked the hospice chaplain to share at my dad's funeral, and it was a highlight to hear how they had connected and how both had encouraged one another. The chaplain was also there for our family before Dad's home-going, during his dying days, and afterward. If you've never experienced the good care of a good hospice, then you and your loved one are missing a wonderful blessing. To be able to die at home or in a hospice facility with loving people surrounding the patient and having the least amount of pain as possible is what I hope will be available should I ever have to endure a major illness.
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Atul Gawandes book Being Mortal was a God send to me. Your local Library might have an audio (CD) copy.
Just listened to it on my commute to work.......am listening to it again....this time taking notes.
My Mom is in much better shape than yours @ this juncture and even I am re thinking another hospital stay. It set her back too.........took some time to return "to base line."
After reading the book I have a much better understanding of what my mothers wish "to die @ home" really means & how to accomplish it.
I now think of myself as her pre Hospice advocate. Every caregiver will benefit from this book as it outlines several situations we as caregivers are living every day & the decisions that were made along way with respect to medical intervention & dying with dignity.
As hard as it is we must hear our loved ones & move forward in peace whatever decision is right for THEM. As others have said "we have the answers."
I am not a religious person per se but I do believe in the power of prayer. Ask for help & guidance through this heart breaking challenge.
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My MIL was at our home most of her last year with lung cancer; her month or so was really difficult, as she couldn't sleep no matter what they gave her, and would lay awake at night calling out "Lord, have mercy, I want to die" over and over again. At one point she got really uncomfortable and went back to the hospital for a few days, and then went to another son's home with hospice. The hospice nurse came in every few days and worked with my SIL, and she passed peacefully early in the morning in about 2 weeks. We knew there was nothing more that could be done, and this is what she was ready for.
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Hospice, absolutely. Our role is not just caregiver but advocate. Clearly your mom has made her preferences known. Just as important, based on your post you know in your heart what you should do. No doubt all of these responses support you in your decision. Best wishes.
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I agree with Ms Madge. I had to make the hospice decision for both my dad and my finance. Neither of them were in the position to verbalize their wishes at the time. Other people were related to my loved ones but too overwhelmed to realize the seriousness of the situation. It helped me to get quiet. Literally do a pro and con analysis. Listen to my heart as to what they would want an advocate of theirs to do for them. That is love. That is care. Hospice is compassionate. Part of the struggle with making a decision is that it is coming at you when you are exhausted and the mind is racing. Take a breath and step back. You have the time to come to a decision so that you are at peace. Hospice has counselors for you to ask questions and share your concerns. You are not alone.
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