@cardinalfang - is there a hospice retail shop in the area? I know some will take medical equipment.
Cardinal Fang, it sounds like you have tried your hardest. More than expected since you just lost your mom.
Thanks all for the good wishes and reassurance!
I found a hair salon that is willing to tackle detangling Mom’s hair. 
DH pointed out that the condition of her hair could be contributing to her down mood. I think he has a point. She’s always been very proud of her hair and I’m sure she’s distressed that she let it go. I told my dad he needs to brush it out for her regularly.
Hospice accepted my mother! Wow, this was our third evaluation in a year and I did not expect it. Lewy Body is notorious for ups and downs but even if she pulls another miraculous recovery, we get 90 days of their assistance. I’m pleased as she has had no quality of life this past year and I appreciate the advice of people who see lots of these sorts of issues.
I hope hospice can help YOU and your mom have a better quality of life. It’s great that she was able to qualify after this 3rd evaluation–I guess 3rd time IS a charm! It is also possible to exceed the 6 month prognosis and get hospice extended if it is still appropriate (but cross that if it comes). Good luck!
somemom, that is great…hospice was so helpful to my mother, and, as often happens, those services got her OFF hospice in 3 months. But then she went back on, then off It is a great way to get an aide, nurse, social worker, chaplain and volunteer. We found the aide especially helpful.
I took my mother for an assessment at the memory care facility we had chosen, yesterday. We spent two hours there and during the assessment (which she failed of course), I showed the colostomy bag we use to the nurse assessor.
On our way out, literally on the door threshold, the admissions person asked if I had discussed the colostomy with the nurse assessor/director. The admissions person had previously told me “oh yeah, we have three people here with colostomies, no problem.”
Well, it WAS a problem. The nurse director said “We cannot have any contact with colostomies, We cannot even change the bags.” Geez. The people here with colostomies have had them for decades and even with dementia, do it all themselves. My mother doesn’t even know what that bag IS!
They did call the regional manager, who, hours later, said they would change the bag, but I do not want to start all over again training staff the way I did a few months ago, so no go.
Maybe it’s for the best.
I’m sorry that didn’t work out @compmom. What part of the assessment did she fail prior to the colostomy? Can you get her back in the AL where you gave notice? @somemom I agree that hospice can give you a variety of services to help with everyone’s quality of life. So glad you’ll get some assistance. Yes, I wish we had hospice sooner for mom, but I don’t think we could have gotten hospice sooner. She declined so quickly.
I have read parts of this thread over time, but now jumping in. My dad is 89 and has had 9 lives, but I am afraid he is running out of time. We came to the ER last night for a hernia. The doctor was able to push it back in, but by the time he was admitted and in the room for awhile, it was back out again. He now had a weight on it, but surgery is in his future. The problem is, he has been in heart failure for awhile and has stage 4 kidney disease so surgery is not a great idea at this time. He has been in the hospital for two long stays in the past year for pneumonia and fluid build up. So last night we enter with a hernia, and now he is having trouble breathing has a horrible rattle which wasn’t there last night!
I am also seeing some confusion for the first time, or maybe he is just worn out and the words are coming off his tongue. He was able to answer all the nurses questions, but when he wants something, like his pillow straightened, he can’t verbalize it properly. He then gets frustrated when we ask for clarification. So this man that was self sufficient two months ago, may need care going forward.
During the last stay it was suggested we look at palliative care and my husband spoke with the doctor about it. My parents were not ready to go that route at the time, so we didn’t push it. I do think we need to come up with a plan for what next, but with heads in the sand, I am having trouble addressing it.
Confusion in the hospital is very common and doesn’t necessarily predict a similar state once out
My mother has heart failure and stage 4 kidney failure and surprised us by doing well with surgery but it was minimally invasive, “bandaid” surgery (colostomy). Can your Dad’s problem be handled that way? Or with regional or local blocks?
Is your Dad normally on a diuretic like Lasix? Did they stop it? How did they explain the breathing issue that appeared in the hospital? Are they doing nebulizer on him? My mother rattled like that (“junky”) right up to surgery so I got a nurse to do nebulizer just before the surgeon came pre-surgery, so they wouldn’t cancel it!!
Is your father on IV’s? If they put patients like our parents on IV’s, their legs swell up and fluid builds up around heart and in lungs. And often they stop the Lasiz. I had to push push push to get them to reduce hydration and put her BACK on Lasix.
One other thing, a new med called spironolactone does wonders for my mother’s fluid build up/congestive heart failure. I got the hospital to resume that too, after many discussions, and it still took a few weeks to get the fluid out.
Main message- and I don’t know details- is that your father’s current situation w/confusion and with fluid/rattle may very well be temporary. I don’t know that of course, because I don’t know the answers to the questions or much medical info, but I am at least suggesting some hope.
Palliative and hospice don’t have to mean imminent death of course, or even death in 6 months. My mother and many others on here, as you have no doubt read, have been off and on for quite awhile. It is a great way to get services that are covered.
@compmom As I sit here he is receiving a Neb treatment and just got a shot of Lasix as they stopped the IV. As you probably know, what is good for the heart may not be good for the kidneys! It is a never ending game of what is most important.
He has been on and off diuretics, and again, depends on which doctor he is seeing. One puts him on it and the next wants him off. It gets overwhelming for my parents to figure out what to do. My dad has been using the same cardiologist for 40 year; the doctor in 80 years old himself! He had taken over checking dad’s meds to help with how he feels and his blood pressure, which has been horribly low the last few weeks. Of course now in the hospital they want to change everything 
As far as the hernia, still waiting for the surgeon to show today. The PA doesn’t want him eating as the food has nowhere to go. Then the nurse says why can’t he eat; there are no orders. What research I have done makes it sound like it could be done with an epidural, but all the docs have to be in agreement. The night surgeon did put a compression bandage on it to help hold the hernia in and he has a sandbag on it; when he would cough, the pain got the best of him.
it sounds like diuretics are helpful to him right now. I had to tell the hospital that my mother’s kidneys needed to be worse!! When her kidney tests are better, her heart and fluid are terrible, and vice versa. The hospital apparently didn’t know her usual kidney function and they also didn’t notice her huge legs!
It’s so hard. I hope you find the right balance, that the correct meds follow him home, and that repair of the hernia goes well.
My mother spent 5 weeks on IV fluids with no food. She’s fine now. Hope your Dad gets better- and that you get some rest!
ps maybe ask about spironolactone!
While the diuretics and neb treatments are helping a tiny bit, dad is not doing well at all. The cardiac physicians will not give clearance for surgery as besides the inguinal hernia, dad has, and has had for as long as I remember, a massive hiatal hernia that takes over almost his entire chest. The inguinal already has dying sections; without surgery, he will get very sick. It is thought that he has aspirated, causing his breathing issues in addition to the fluid build up.
Dad gave the appearance of giving up this morning and by the afternoon he was not responding to us. The cardiologist said he may only have hours; really hoping he is wrong!! After a night of sleep, I am going to see about hospice care. Unfortunately, I just found out the place I wanted to use, a dear friend is a major donor there, recently closed:( I don’t know if my mother would like in home hospice; he place is small and I think it would be very hard for her. It is a discussion I need to have tomorrow.
I really was doing ok as I have been busy taking care of my mom, taking to physicians and calling close family. When I spoke to my daughter who is 36 weeks pregnant and lives out of state, I lost it. She was crying as she will not be able to fly to see him. When she talked to my mom, my mom said she was sad dad would not be able to meet her baby and dad was looking forward to her birth. I know the whole circle of life, but I couldn’t keep the tears in.
Thanks for letting me ramble.
Sending hope for comfort for your dad, your mom and for you (( @snowball ))
@snowball so understandable that you would hit the breaking point. There’s nothing worse than one of our kids expressing their emotions about a family member who is ill or dying. It’s so heartbreaking. Sending hugs.
snowball, it’s ok to let it out. You’re doing everything you can possibly do. Hugs and comfort to you and your family.
Hugs to you @snowball. For right now, if palliative care is consulted, they can help you with those next steps, such as possible hospice placement, so you can focus on your mom and family.
It sounds like things are happening quickly. So sorry. Hospice will be helpful, I hope.
The story about your daughter, and how your Dad wanted to see the baby, is heartrending.
Big hugs from me too @snowball
More hugs, snowball. It’s so hard.
The patient advocate assessed my mom yesterday. She said Mom is stage 4 for dementia. Equivalent age of 12. It’s difficult to process that, but it seems about right. I’m trying to get her to do laundry, but it’s like pulling teeth. I want HER to do it, since she’s capable of it and I will be here only a few more days. My sister doesn’t have time to help her with it regularly. Ugh. I called the retirement facility where my parents been on a waiting list for several years. There should be a nice unit available in about three months! Now we have to convince them it’s time…