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CareGiver2Mom Asked May 2022

Mom was put in Hospice after visit to ER. Is this the right decision?

So a week ago I took my soon to be 95 yr old Mom to the ER because she started non-stop pooping (watery stool).  The same thing happened in Dec 2021 and lasted 3 days so I wasn't about to let it go this time. It started around 2pm and lasted until the wee hours of the morning while at the ER.


She also has Stage 4 Kidney Disease with a GFR of 25 and very dark colored urine (Dark Tea Color). I don't know much about Kidney Disease and what the numbers mean?


The ER Dr ran a CT and blood work. The CT showed her Colon and Bowels were infected/inflamed and that she had Colitis. She was also really dehydrated which I wasn't aware of and her white blood count was elevated. ER Dr's advised was that they keep her a few days, treat the infection and get her on fluids since she has Alzheimers, Vascular Dementia, Lewy Body and is a fall risk. I was reluctant but they kept her and took good care of her.


So when I went to visit her the Dr asked me to sit and talk with him, he started asking questions about her health and her quality of life etc. He told me he thought she should be in Hospice care and again I was reluctant due to the fact that she's not on death's door, but I learned it's not only for those near death.


Anyway, I agreed. She will be 95 on Monday and we think she has had the Alz and Vascular Dementia at least 7-8 years. Her heart is strong, no issue there, but she has severe Osteoarthritis and Scoliosis and now uses a walker. She is confused often and hallucinates causing her to get agitated and nasty pretty much everyday (which makes it hard for me to take her out of the house). She is falling more and more but no broken bones as of yet. Her sleep quality is bad and she wakes up an hour or so after I put her to bed taking her gown off and getting dressed etc. Our primary Dr. had her on Seroquel which did nothing.


Now she is in Hospice care as of Friday and the Nurse came out yesterday for the 1st time. They have prescribed her 1 mg of Lorazepam which seems to be helping her sleep better and calm her down. She hates taking pills of any kind.


She has a great appetite but refuses to drink much fluid. Since she qualified for Hospice and is now under their care, did I do the right thing? She may live a few more years, then what? She is still getting the 3 meds she takes but Hospice doesn't pay for those since they are not related to/for comfort. She takes BP, Nitro-Time ER and a pill to prevent UTI's and Vit D,


We are not telling her its Hospice but rather Home Health, the Dr. said it would be better to not tell her.

Isthisrealyreal Jun 2022
I am so sorry for your struggles. This is so very difficult to have to deal with, your mom is so very blessed to have you.

Have you tried giving her full strength pills at bed time? Might help her sleep.

As far as hydrating her, I would offer coffee more frequently, popcicles, ice milk (cheap ice cream made with milk not cream), soups, broths (you can buy sipping bone broth), and give her alkaline water (this hydrates at the cellular level) . You can buy bottled or find a water store that has alkaline water, it is so easy to drink most people find themselves drinking more. Offer room temperature or cool drinks with a straw. I found bendable, smaller diameter straws at the dollar store and my sister could sip easier with them and while laying almost flat.

Feed her salty snacks to induce thirst. Lime salt on watermelon is really good.

You are right to be concerned about dehydration after what you just went through. Best of luck finding the balance at this difficult time.
CareGiver2Mom Jun 2022
Yes we have tried the full dose of both pills and each time she gets up after going to bed and she falls, if it wasn't for her bedside chair she would of already busted her head, broke a rib or who knows what. The chair was in my office but her under me 24/7 got to be too much so we put the chair in her room so I think it has helped her to not get hurt otherwise.

She does eat ice cream and her appetite is very good except today she refused breakfast because she said her tummy was bothering her but she ate dinner despite her tummy still bothering her. I also noticed today that both side of her temple seem sunken in almost like a person who has had a brain injury. I'm wondering if it the dehydration plus the aging? She eats soup once in awhile but we have been having 100 deg days and its too hot for soup, but I offer anything I can think of but due to her incontinence that is also another reason she refuses to drink more than she does. Its a losing battle.
CareGiver2Mom Jun 2022
SO here's an update,

Mom turned 95 on May 30th and is in Hospice Care at home since this 1st post. They are giving her Trazadone and 1 mg of Lorazepam but she can't handle the full dose because it makes her fall and I don't want her breaking a hip or another limb so I am giving her only half of each which is not helping with her sleep. She's very restless at night and doesn't sleep well at all, maybe just a few hours if that.

They started giving her a stool softner to help her poop on a reg basis but that ended up making her poop more than 6 times in one day which was too much for her and for me. Since then I am just giving it as needed if she's not going on her own.

She seems to be dehydrated again because of her lack of fluids, the hospice nurse tells me to just offer fluids and if she drinks fine, if she doesn't don't force it on her which I don't. She only drinks coffee once or twice a day, with breakfast and maybe dinner and then water with pills and at times sweet tea. She eats salads and watermelon too which helps a little but i'm worried about the dehydration and what other issues it may cause to happen.

She's still seeing people in her room, a few days ago it was a red headed man that sat on her trashcan and watched tv with her, other days its people with financial papers asking about my home. Since her birthday we have been asking her how old she turned and she is telling us "54" which is my age so everything is changing. The hospice people are very nice, the nurse comes on wed's and the lady to give her a shower comes on Tuesdays and the social worker has came twice so far. Grief people have called to see if I want to seek therapy but I haven't done that as of yet but am planning too due to the anger with my lack of care/help from siblings etc and just for my state of mind. Just trying to take it one day at a time.

If anyone has some info on the dehydration and what I can expect to see would be helpful, ive been reading about how it can be deadly to someone with stage 4 kidney disease which she has :( Thanks

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babsjvd May 2022
Absolutely Hospice.. they are a Godsend. My mom just passed a couple weeks ago.

Once she started having reoccurring falls, it. Did not take very long for my mother to become wheelchair-bound/bed bound. As it progressed from the falling to barely being able to stand to pivot, she was dying. Hospice had been on board, that wheelchair had a ride before she needed it, may be three weeks, the Hoyer lift gets ordered, arrives the next day, same for the hospital bed. I don’t know what would’ve happened if they hadn’t been there. It was the weekend, where he is not a lot of help at my mothers facility. They should have called me. But I found she had been refusing her morphine, on Mother’s Day I could hear her moaning down the hall. She was in pain. Hospice, got on top of that… My mother was actively dying, .. it happened pretty quickly, I’m glad Hospice was there for my mom and for me.

So my answer to you, is thankfully have Hospice put on board
CareGiver2Mom May 2022
SO sorry for the loss of your mother, thoughts and prayers go out to you!
notgoodenough May 2022
It's certainly not the wrong decision.

My mom accepted hospice 8 weeks before she passed away. In that time, they never, ever pushed drugs on her; they were extra eyes and ears; they didn't hasten her "end" in any way, shape or form. And when mom began transitioning on a Sunday afternoon, when I would have had a devil of a time getting any "regular" medical personnel to give me assistance other than transportation to the closest ER, I had all of the medications in the house to be able to keep mom comfortable. And any concern I had about "will I know when the time comes to give this stuff to mom" was completely wiped out of my mind; I had no doubt the time had come to start the comfort pack medications. I was grateful to hospice for their care of my mom.

I wish you and mom peace during this time. (((hugs)))
babsjvd May 2022
Blessings to you… I would have not known either …
lealonnie1 May 2022
The thing is, your mother will pass when God says it's her time, whether she's on hospice or not! Hospice has no say in that. They're there to keep her comfortable so you can stop taking her back and forth to hospitals for torturous tests and whatnot..... that serve no good purpose at this point in her life.

My mother was about to turn 95 when hospice finally agreed to accept her, in spite of thinking her passing was not imminent. She wound up taking to her bed on a Tuesday, 2 months later, and going into a semi comatose state, and passing 1 week later. With advanced dementia and heart issues. She died peacefully and hospice was a real Godsend for all of us.

You did the right thing.

I wish you peace during this stressful time.

TChamp May 2022
Her kidneys and other vital are just shutting down. Some organs are still barely working but not for long. I'm afraid to say that the end is near. After 95 years her body has worn out almost completely and the is no way to stop her final fall. I'm sorry that you will lose your mother soon. However, you must agree than she had a very long life. Well above the average life expectancy for women in the United States.
CareGiver2Mom May 2022
I have a hat that you place in the toilet to monitor how much urine she is putting out and look at the color, today it looked nothing like it did when she was in the hospital. The urine color was yellow today but a week ago it was dark tea color. I prefer that she doesn't suffer. This was the 1st time she had been in the hospital since she had bladder cancer less than 10 years ago, I don't remember when it was exactly. Yes she had a long life, and the Dr's say she has a strong heart, she is the oldest of 4 girls and 1 has died already but she has 1 that just turned 90 and another in her 70's I think and they have not seen each other in years and doubt they will see each other alive again because they live in another state and have health issues.
JoAnn29 May 2022
What happens with Kidney desease is the kidneys can no longer filter out the toxins. So the toxins remain in your blood stream and poison your body, you get septic. Thats why there is dialysis, to clean out these toxins. But with your Moms age and Dementia, dialysis is probably not an option. A doctor does not recommend Hospice unless he really feels its needed. You need to ready yourself for the inevitable.

Mom not being able to swallow can happen overnight. My Mom passed a week after she could no longer swallow. TG for this forum because I knew what that meant. It was suggested she be sent out for a test and I said no, I was not putting her thru that. It was her time.

We can't keep them with us forever. Your Mom is 95 her body is worn out. Time to just love her and keep her comfortable.
CareGiver2Mom May 2022
Yes we would never put her on dialysis and she has told us she would never do it. She knows a lot herself as she is a retired nurse. She has a strong heart but with all the other diseases they said it would probably be a severe fall, pneumonia, stroke etc that would take her life not the Alz and Vascular Dementia. She is turning 95 Monday.
CareGiver2Mom May 2022
Thank you for your input!
I was very hesitant to put her in Hospice care and the Dr at the hospital kept telling me that it would also help me as I have my own health issues including heart disease. I posted the entire family dynamic a few months ago in this forum.
So because she eats really well with no swallowing issues as of yet so no liquid or overly soft food is needed yet and she walks some with a walker but does fall at times. I didn't think Hospice would benefit her yet or me as the Dr said it would. I assume she will live longer than 6 mo but we really don't know, maybe the Dr knows more based on what he saw and is why he suggested it.
I know very little about Kidney Disease and GFR numbers and I have read about it but don't really understand it all. I just thought the lack of drinking water is why her urine is so dark but from what your saying, its her kidneys starting to fail which the Dr didn't tell me. I have noticed that since she came home from the hospital (a week ago) she is peeing a lot more than she normally did and going through depends pretty fast and she has not had a BM since being back home either so I'm not sure what is going on there. I am giving her Mirilax and Fiber powder once a day and hospice is going to send a pill that helps with constipation.
The hospice team is short handed so they don't have enough helpers/aids etc to help come give her a bath twice a week which would really help me. The social worker came out with the nurse on the 1st visit and a clergy man called but I have a pastor when/if needed.

Some days she is very Lucid but also confused about the day, month, year etc and a few months ago she was calling me by my sisters name then all of a sudden that stopped. She hallucinates a lot and sees people here and tells me about them everyday and she accuses us of stealing etc. She gets mad at me because I will not take her to walmart and just drop her off to ramble for hours because in her mind nothing is wrong with her.
I am her only caregiver because my other siblings have no relationship with us and don't care besides my brother who lives in Col.

We watched my MIL die of cancer but she also had Alz and we were with her when she passed and she had hospice but it was a different situation due to the cancer. I am prepared and hope when she goes it is peaceful or in her sleep.
babsjvd May 2022
Oh , sounds so familiar. I think my mom gave up when she asked where we were going out to eat for Mothers Day, and I had to tell her we couldn’t because I could not have got her into the car…
was always wanting to go window shopping..
and yes , the hallucinations… about the building across the street, I put her Christmas tree up early and left it up into February.. she loved the tree being up , it gave her comfort.

Blessings to you and peace…for your mom as well as you
AlvaDeer May 2022
What you tell your Mom is one thing, but I don't want you misled by the MD yourSELF. Hospice is end of life care. Period. Hospice recognizes that treatment for cure is no longer an option, that a patient is dealing with illness and perhaps other complications such as aging that mean that there is little to be done as far as the miracles in the MD bag.
In this day and age sometimes an MD will "fudge things" a bit with the government in order to get hospice and the extra care with bathing, support that it represents. However, when an MD orders hospice he is saying that in his professional opinion the patient has fewer than 6 months to live. There will now be no trips for testing, no plans to medications that are meant to cure.
You know the age of your Mom and you know that stage IV kidney disease means that death is approaching. No one can say if that means days, weeks, months. But the MD's best guess is that it does mean your Mom is very unlikely to survive more than six months.
So I want you clear on what Hospice means. It means that medication for COMFORT will be delivered even if that medication may hasten death by some hours, days, weeks, months. It means no more testing and treatment in hospital. It means no trips to emergency. It means the patient (if mentally capable) and the family understand that death is approaching.
What you want now is comfort for your Mom, to be able to recognize that death is approaching, and is inevitable. Speak with Hospice. Ask to see a social worker. Ask for clergy. All of these are available to you now. Should mom still survive beyond the six months hospice will re assess.
I surely do wish you good luck.
If you WANT to know all about the "numbers involved" in the stages of kidney disease this is readily available to you online.
I hope your Mom remains comfortable. I wish the best for you all.

97yroldmom May 2022
If your mother needs liquid in a food, offer her soups, watermelon and other juicy fruits. Protein drinks in the form of a milk shake (add ice cream etc) are good for some. I suggest this only to make her feel better and if it isn’t contrary to what her care team suggests.
On hospice, the idea is to allow her what she would enjoy and keep her comfortable.
My DH aunt is also 95 and on hospice for over two years except for a couple of months where she took rehab to try to strengthen her. She had been bedfast for several months and although the therapy was a distraction for her for awhile, she is back on hospice and back in bed. Which she prefers.
I don’t say the H word in front of her and ask others not to as well. I hope your mom is able to keep her ability to walk for as long as possible. aunt was on hospice when she could still walk but the dementia is progressing.
That was the deciding factor for placing aunt for facility care and the therapy was the last effort to keep her mobile.
So with all your moms issues and the stress of ER visits and doctor visits, it is a huge benefit for them to have medical oversight at home. You may even find that she gets better for awhile and you can always remove her from hospice (as I did for her to go into rehab) anytime you think you should. Overall it was helpful as aunt had become totally incontinent and a daily bath really helps.

Horseshoemama6 May 2022
At the risk of telling you something you probably don’t want to hear, if you’re mom is having dark urine it probably means her kidneys are starting to fail. I remember walking into my dad’s rehab room one day and seeing his urinal and it was full of dark urine I was in total shock because I knew what it meant that his kidneys were shutting down by the research I had done. I know putting your mother on hospice is hard but it makes everything so much easier for you and her. They take care of everything within you having to talk to 20 different people telling your problems 20 different times and then with them handling her medications it is easier because it’s not different doctors trying to decide what needs to be done. They know how to handle the situation. We didn’t tell my dad he was on hospice we just told him it was a new nurse. When we switched hospice because the nh thought he needed more care from a company that came there every day I made sure they knew not to mention hospice. They assured me they didn’t and that there uniforms didn’t have anything on them that said hospice.

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