Dementia and congestive heart failure - should I let them put mom in the hospital?

I also agree with most responses. Hospice is the kindest way to go. according to you mom has made it clear that she doesn't want to go back to hospital. my mom and dad died a few months ago. they both said enough is enough. I am not going back to hospital. let me die at home in peace please. I did what they requested , and yes it broke my heart but I did what they asked me to do. dad died first and mom three weeks later.
I am heart broken and miss them so much. I did the right thing by calling hospice to help with the remaining time they had on earth. I spent every minute with the them until god called them home. its the right thing to do for your mom. hospice takes care of everything for you till the very end. good luck and god bless.

Only just saw this question so have not read all the replies. most Drs are of the curative mentality but OP's Mom does not sound as though it would help her at all except briefly then she would be back in the same boat.
Once you have talked to the hospice people they will make a recommendation about her disease and whether they will admit her to full hospice care. There are slightly different rules for Palliative care and the services are more limited but they can last much longer, really good for shut ins who are unable to easily get out for Dr visits. A nurse will visit regularly and communicate her findings to the patient's Dr. There will be other services available depending on the patient's needs.

This may be a little off topic, but I see palliative and hospice mentioned in the various responses. What is the difference?

I am going through same exact thing with my mom who is 89. I choose hospice. I want her safe, medicated to comfort and clean. Hospice started today and she enjoyed the company. In addition to life long depression, now, late stages of dementia, she is recovering from hip surgery 2 months ago. She wants to die and I don’t only understand why, I would be asking the same if I were in position. She lived a happy, long life and deserves to make the decision when enough is enough.

Get in touch with your local hospice. No hospital if possible.

What is difference between hospice and palliative care? Hospice was used for father but by time we (adult children) were summoned by staff, we were allowed very little interaction with hospice personnel. Understanding more of the end-of-life symptoms, in hindsight, would have made it so much easier for us. Akin to being kept in dark? Yes. Forgive, yes; but still tough! A few hours or minutes of final conversation before too late, days prior, would have been cherished.

It is hard to know what to do under these circumstances. My sister and I were faced with that also with our Mom and we chose comfort care as they call it in our area rather than Hospice. She was already in a nursing home so she went back there and basically kept medicated until she passed in only 3 days. I know it was the best thing for her because she was miserable and would not be able to get better, only suffer longer. I basically didn't know what comfort care meant and that it would be so quick. If I had I would have stayed there with her even if she didn't know I was there. When there is no quality of life then I think it is the most humane thing to do, but just be with her.

If my mom gets to the same point as yours, I would do hospice.

i am so sorry that your mom is going thru this. my dad went thru the same thing. leg issue, dementia, and much more. he also came home from hospital ten times worse than he went in. hes was 92. all I can say is you have to go with your heart. I weighed my options with dad. hospital stay, might not survive come home worse than left. or ease his pain and make him as comfortable as possible with the help of hospice care. stay with him and love him to the end. my choice was to go with hospice because I knew his life was coming to an end and I wanted him to go in peace. dad lasted a couple of weeks and he passed away in my arms. painful for me but peaceful for him. If I had to do it again I would do the same thing all over.....
I wish you the best.....

I agree with the post to read Being Mortal. Excellent. We are caught up in safety and medically managing people so they can have life without quality

I put my 89 year old on Hospice it was a very hard decision. But one I haven’t regretted, the care that she is receiving and the support that I get has been wonderful.

My friends' POA document giving me authority over their finances and health matters also had end of life care stipulating no heroic efforts, tube feeding, etc were to be made if there was no chance of recovery. If you mom hasn't made those choices on the end of life care forms, she is telling you verbally her wishes. I agree with the others that her wishes should be honored and hospice would be a good way to do that. I was so impressed with hospice once they took over. Their care and monitoring kept my friend comfortable and calm until her passing. This is hard. We want them to cling to life and feel responsible for that even if they don't want it any longer. My faith teaches us not to fear death, but to look forward to what awaits us when our soul goes on. Perhaps such a thought will provide some calm to your dilemma.

Having Hospice in the home does indeed provide support but the strain on the primary caregiver is not much less. Hospice is available 24/7 but they can.t except in rare cases provide 24 hour care.
There is the benefit of the 5 day respite when the patient can be moved to another facility to give the family a break, but in the case of dementia they may choose not to do that because of adverse effects on the loved one.
Of course there are frequently the feelings of what if mingled with the grief and the caregivers do get relief from caregiving but their lives have often been so altered by the experiences that it takes months or years to recover if they ever do.
The decision to call Hospice is not usually taken lightly and not usually with the intention of shortening the loved ones life. It is a very hard decision for most families and often taken at the last minute when shelved one is within literally hours or days of death.
I agree with my previous post and those of others that in this case hospitalization would not be the loving thing to do.

Bob,
The things you said are true.
Their (c/g) lives WILL be easier if their LO's death comes sooner.
Also less work will be required on their part.
They probably ARE worn out by caregiving.

But I would like to think that my fellow man would place the needs of their LO's FIRST in making the decision for hospice. None of us want to see our LO's suffer.

In my case, my mother is 95, end stage Alzheimer's with all that it entails. What potential does she have for continued quality of life. I am an only child, so I will inherit everything (a couple thousand dollars).
My first thought is that I never want her to be hurting or in pain or having anxiety. I choose hospice BECAUSE of that.

Does it occur to me that my life will get easier when she passes-yes. She won't be here in the physical world anymore. Then that feeling can mingle with the sadness on the loss of my mother.

I'm going to put faith in my fellow humans that they would act on the needs of their loved ones first.
Forever the optimist! 😊

From what I see no one has mentioned this here, but I wonder if a bit of the guilt many people feel about hospice is that they realize their own lives will be made easier if their LO's death comes sooner (and perhaps somewhat less work will be required on their part during the time the LO is in hospice); thus, they're subconsciously thinking "am I using hospice simply for the loved one or am I doing it in part for myself?" I've read many questions and answers on this forum to the effect of "I'm worn out from caregiving". Has anyone else thought of this or struggled with what may seem to be a "conflict of interests"? (If there is a potential inheritance involved, this could add to the feelings of guilt.)

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?

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.

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.

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.