Dementia and congestive heart failure - should I let them put mom in the hospital?
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 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.
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.
I wish you the best.....
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.
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! 😊
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 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.
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.
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.
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.