Hospice isn’t helping much. I expected more.
This post is in my discussion of home care not working. But I feel like it’s buried.
After 6 months, mom seems to be going into a decline. I spent yesterday with her and she was breathless to the point of barely being able to eat all day. Having a BM on the commode was an absolute ordeal. It took her an hour, and then another half hour to get her back into bed. After that her respiration rate was 32.
I do have a call into hospice, but I feel they are no help. As Alva has said many times, they come in for their weekly visits (maybe 2 nurse visits for less than an an hour, 1 CNA visit for a bed bath, and alternating social worker or chaplain visits, down to about once every 2-3 weeks now.)
Sadly, I think mom thinks they are going to call the calvary when she gets to the point where she really can't breathe. But reading other websites, I feel like we will be lucky if they even show up for the very end. All they have to offer her (besides the hospital bed, commode and O2 machine) is morphine and benzos. And mom continues to take LESS than the minimum prescribed doses because she doesn't want to sleep.
The doctor, the nurse and I have explained over and over that the sleeping is due to the progression of her disease, not the meds. She is literally on subclinical doses after 6 months. (Like 0.25mg clonazepam). Yet she fights to stay awake, says "I can't breathe" several times an hour, and when she uses the commode and her O2 dips into the low 80s she cries "help me" at which point I just about beg her to take the full morphine dose. But she wont. She says we are trying to put her to sleep.
She is now accepting of the fact that she is dying. But she thinks hospice is going to swoop in and save the day. The only thing they are going to do is continue to raise he medication doses to make her comfortable, but she won't take them. Hospice says we can't force her to take them. But it's agonizing as a family member.
I want THEM to tell her firmly that her only option, if she doesn’t want to feel like she’s gasping for breath all day, is to take the meds as prescribed. They act like they’re afraid of her.
I expected more from hospice. They said they provided "wrap around care" for both the patient and the family. I told the chaplain much of the above, and he said that's "out of his wheelhouse". So I guess the idea of him providing ME counseling and comfort is out.
Also, my efforts to find a hospice home, even in a nearby state, for end of life have been fruitless.
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He's prepared to do the same and more to hold off my brother, who is now my only living family member, probably soon to be estranged, even though I am doing everything in my power to make sure he gets his half, despite him doing exactly nothing but take from my mom.
I did hire an attorney, but have not met with her yet. I have been trying to emphasize the urgency of my situation, but I guess everyone feels this way.
I believe we CAN cash in mom's life insurance and take the money before the estate is finished in probate. If that is true my brother will get $10,000 which I hope he can use to find a place to live until the house is sold.
In other news, mom's late BF's daughter texted me, without a word of condolence for the woman who saved her from having to care for her own father, and started demanding items that were his. I'm happy to give his family his items, and feel that mom should have done it when he died, but she was a hoarder and they knew it. They don't have to come at me like a junkyard dog.
Also, I paid mom's bills and there are fraudulent credit card charges from just a few days before she died. Just another problem to deal with. The stress is not letting up. I'm also worried about the house being empty, as I'm pretty sure it was entered when she was in rehab. I guess we're going to have to get security cameras. Just add it to the list.
As much as this all just stinks and sucks you can not let this boundary down out of fear of what he will do.
Use the law if needed and KNOW that anything he chooses to do, it has absolutely NOTHING to do with you. If he threatens, call 911, every single time. Otherwise he will hold you hostage to his bs for the rest of your life.
Loving him doesn't mean laying down and being walked on by him. It means doing the hard things for the best for everyone.
And yes, DH and I convinced mom to kick him out last time around. He ended up getting his dream job which also provided him housing. And rather than live in a camper like the last time he was homeless, he could buy a nice mobile home, or tiny cottage outright with the money, and do whatever he wants with it.
My husband will go over and serve as bouncer Saturday. I will stay home. I made a list of the very few things I want out of that house. I have already removed all documents and files. My nephew said he would take the dining room set, which is doing me a favor. I may have takers for the other furniture, which isn't much.
I think my SIL understands now that I can't hand out money, and my DH will reinforce that. I am giving her daughter mom's diamond wedding ring.
My ex SIL, who was one of the only ones who stuck with mom throughout hospice, helped care for her, etc. is really pushing me. She started day 1 after I had been up for 48 hours when mom died. Wanted the funeral scheduled immediately, wanting things a certain way, rushing me.
I know she's resentful that she didn't get paid for caring for mom, when others did. But she is not a relative by blood or marriage (which the PCA agreement required). Now that mom's money is the "Estate of..." I can't just give her money (even though I would like to). She is resentful that my brother who did nothing, is getting half, and so am I, but that's the law.
She also wants her 3 adult kids to get a cut, but I said that's up to my brother, since they're his kids. I'm not taking it out of my half. There's not much money left, we were soon to be applying for Medicaid. It's really the proceeds of the house, which will take a while. It's hoarded and needs to be cleaned out. But after I and my husband cared for mom for the last 4 years I don't want to give my brother's kids my half.
SIL has people lined up to clean out the house Saturday because my brother is away for the next 2 weekends.
Worst of all, my brother is planning on MOVING IN, and moving not one but THREE CAMPERS into moms backyard (1/4 acre with a ranch with a huge addition on it, so maybe 1/8th acre). Things have been peaceful and amicable up until now, but I may have to take legal action against him. The main house was all redone, less than 5 years ago, and is like new, because mom lived alone and could barely get around, barely used the appliances, etc. Although she did PAY people to FILL up the bedrooms with all her "treasures". Carpets are pristine, but he will wreck them.
It's so stressful. It might have been able to stop and take a breath if it weren't for my brother. Buy I also just alienated my husband who has something like a 12 point plan. He has people lined up to fix the house etc. & is chomping at the bit to get it done so we can get rid of it before my brother becomes entrenched.
I just saw that your mom has passed. Thankfully she is no longer suffering and your recovery can begin. You sound as if you are in shock. Know that you are vulnerable in this state and must take extreme care. Big hugs to you. You have done all that anyone could do and more. Rest will help. Let others comfort you. It’s okay to ask for what you need. We are here for you.
My brother fell off the face of the earth again. After I called him to tell him mom died, he called me later in the evening. I had been up for two days and felt ready to collapse. After we discussed funeral dates I had to cut him short because he’s manic and was going on to multiple other topics. I texted him 8-10 times yesterday and asked him to meet me at the funeral home today. Nothing. But I literally don’t have an ounce of energy left to worry about him.
Also, I have no paid time off from work. I’m taking time off without pay, which is ok. But what is the customary amount of time to take off? I don’t feel like I can go in at all this week. And I work with high school intervention students. I can’t be a wreck in front of them.
I think that there is great wisdom in in the ancient Jewish tradition of taking 7 days to mourn intensely. You should take that time off if at all possible.
For the next month, at the very least, you need to be very gentle with yourself. Get yourself to your doctor for a full checkup. Schedule time to meditate, sleep without interruption and at least one massage if you can swing it.
I would totally share with your high schoolers that you are mourning the loss of your mother. You will set a sterling example of how not to deny/ignore/spackle over the hard parts of life.
Grieve your mother but don't feel guilty. Do not second guess anything you did. You did better than great.
You did right by your mom, no matter how awful she was to you. You did your best and that is all anyone can expect, from ourselves and others. You are only human and you were subjected to a lot the last 6 months of a lifetime full of stuff.
Maybe take that special aid on a picnic and grieve together for the end of a human life so closely linked with each of you for so long. It can be therapeutic to grieve with another that walked were you did.
Hugs for all you did and may The Lord give you mercy on this new journey of grief.
After what you went through, I wouldn't expect you to be doing well.
My GF lost her husband and father, both in November. She still cry's daily hasn't stopped crying and that's ok. She can't go to stores by herself, because someone needs to be there to explain to people, of she starts to break down.
She is starting to smile and laugh more, I want her to join this forum because I think sharing her story will help her and others.
What you have been though sucks, what your going through now really sucks.
I think grief counseling would help. The hospice issue is really upsetting, I mentioned before I went through that but it was in the first yr of covid before any vaccine.it was so hard doing it alone, and it made the whole process so much more disturbing.
They barely gave us a decent word on the phone. I understood why no one could be there but they absolutely should of been able to talk us outta a panic attack over the
Phone. It made the whole situation so much more painful, and feeling so deeply alone.
I still have negative feelings for hospice. I know they do great things but the one people that say they will be there, and they weren't even there for a 5 minute phone call.
The only thing that saved us during it all was the fact that my brother was in Afghanistan, so it was actually relatively easy for him after things that he has been through.
Good luck Lilly, your not alone, you will find a day when the tears stop and your heart heals a little bit.
I was so burned out, angry and resentful. Objectively, as if I were looking at my best friend in the same position, I would say of course- you were days away from a total breakdown after working 5 days a week and spending every weekend caring for mom, for over 6 months. Not counting when I was caring for her full time at the beginning. And the 4 years leading up to this.
I feel guilty for things I’ve said about her on here, but the truth was she was often selfish and demanding. My family gave up their entire holiday season from Thanksgiving through New Years so we could care for her and no one (but me) complained. Then I think of how helpless and frail she was at the end, how heartbreaking it was to watch her die, and I lose it.
I also didn’t intend for my 20 y/o daughter to witness it. She’s having a hard time, and left last night to go back to college. And my son, who has major problems of his own that I have mostly ignored over the past 6 months, is struggling too.
Also, mom’s Aid is wracked with guilt. My mother begged her not to leave. But she can’t work 24/7. She feels like she abandoned mom in her hour of need. I told her she was a blessing, who I literally feel was sent by God, and that mom knows she didn’t abandon her, and that the Bible says we don’t know the day or the hour. Idk if she is religious but I wanted to offer some condolence. Everyone is offering me condolences, but she is grieving alone.
Its all just too much. Also hospice called me with their excuses today, and said they had “no way of knowing”, on which I called bullsh*t. They didn’t believe me since they didn’t see it themselves.
Thank you everyone for listening, and for your condolences.
Being a caregiver is extremely hard.
Our emotions are all over the place as caregivers.
You have experienced a significant loss in your life. It’s going to take time for you to process your emotions. Healing doesn’t happen overnight.
Wishing you peace.
But am very sorry, and while it is true she is in better place its still hard and will be hard.
I know I have not said anything no one else has, but I know how I felt when my dad died six years ago so my deepest condolences .
I am sure your mom would be so proud and appreciative for how caring you were for her.
I'm sorry that hospice let you down, but God didn't .
When things have calmed down a bit, you may want to write to the head of your moms hospice agency to let them know horrific the treatment was that you and she received from them, so hopefully no one else will have to go through what you both did.
That's what I did after my husband passed as I didn't want anyone else going through what we had been through with our hospice agency.
And since that time I have heard that some major changes for the better have taken place in that particular agency, so it certainly can't hurt to share your experience.
But for now, just take care of yourself, and know that you did the very best you could,. And take comfort that your mom is now finally at peace.
God bless you and keep you in the days, weeks and months ahead.
In the end, there are lots of hospice organizations and some care more than others. It has become primarily a business.
I bet you wanted to punch that hospice nurse in the face when she showed up.
Be kind to yourself and take your time recovering from this excruciating journey.
You did a great job in less than ideal circumstances . (((Hugs)))
Please don’t be too hard on yourself. As you say, you’re human. None of us are perfect.
I am so sorry for the loss of your mom. Wishing you peace during this difficult time.
My husband had stopped by and I stepped away from mom for a few minutes to talk to him. When I got back mom was staring wide eyed at the ceiling with her mouth open, breathing. I soon realized what I was witnessing. I texted my husband to come back.
I held mom’s hand and told her I didn’t know if she was seeing dad or grandma or someone else, but it was ok for her to go. That we would be ok and that we would take care of each other and take care of my brother. My husband walked in and had his hand on my shoulder and my daughter was with him and said goodbye too.
She didn’t seem to be suffering. Her respirations got slower and slower until they stopped. It was as good as it could have been. I do feel bad about being angry and resentful during much of this journey, which I’m sure mom sensed. But I’m not going to beat myself up. I’m only human.
Praise The Lord that her suffering is over.
May The Lord give you strength, peace and comfort during this new season in life.
In the meantime I’m wiping mom’s mouth out with those little sponges, and trying to talk her down out of her hallucinations. Hospice gave me no advice on any of this. Luckily I have a college biology background to help with the meds and counseling experience. But I’m barely getting through the days.
I would NEVER have let this home hospice happen if I knew it was going to be like this. I thought she had 2-3 weeks to live.
I want to have her brought to the hospital, but the last 2 times I called 911 they had to carry her out in a chair. The can’t maneuver a stretcher in here. She was terrified then, and now she can’t even sit up. They strap you in so it would be traumatic for her. Plus unless they can totally sedate her she won’t go!
My dad died at home and it was a nightmare for his wife. She did the majority of his care. Later he was placed on oxygen because of problems breathing. Hospice was supposed to be there, but I don't think they were much help at all.
My niece is an alcoholic and still has this horrible memory in her head after almost forty years ago. It is traumatizing for family to witness this.
The hospice that I had for mom were good. The hospice nurse came in the middle of the night to do the post mortem care. I had grief counseling for about a year now that I think back. It is so long ago now, I can't remember. All I remember is that mom wasn't in that much pain and passed peacefully.
My client didn't have a peaceful death at times and would have benefited from some ativan or morphine. In the hospital this could have been administered. Her sister wanted to feed her breakfast and I held my hand out, no. This client was already in the active dying process and taking food would have made the impending death even more unbearable. Dying is a process and the organs are shutting down. She did ask for water before she started slipping away.
I think hospice/palliative care in a hospital is the best for everyone involved. You have round the clock care. Palliative care is when treatments are still being issued.
I know this is a painful process to watch, and I am so sorry that you are going through this with this hospice.
I am so sorry this person is giving you the run around, now is the time to be the problem child. Threaten to call 911 and have her transported to the hospital and tell them you will file complaints against their crummy service, speak to a boss, this is utterly ridiculous how you are being treated.
May The Lord intervene quickly for you and get you the help you and mom need now.
So this morning I called the nurse and said the commode is no longer viable because mom peed on the carpet last night, and tried using the commode as grab bars this morning almost tipping it over, and also wetting her pants. Yesterday the nurse said she would put in a request for a catheter to be placed tomorrow morning.
Now she’s saying it’s too dangerous for mom to have a catheter because she keeps getting up and she will trip on it. She wants me to remove the commode and force mom into adult diapers. My usually difficult mom is now incoherent and combative. Yelling at me about things that aren’t real. Like a hole in the bottom of a cup that doesn’t exist.
Then she told me the nurse would asses her for a catheter tomorrow, which means she wouldn’t get it until the next nurse visit whenever that is. I INSISTED she call the on call doctor and have the order in place for tomorrow morning. She said she would call me right back. That was almost 2 hours ago.
Also, she is only struggling for breath when she uses the commode. When she is sleeping she is mostly peaceful.
I wish your mom would stop trying to run the show, even as she is dying she continues to make things so much harder than they need to be.
And I completely understand from your post on another thread about not getting to say the things you wanted to say to mom before she dies and how now it feels like it's too late. The day my sister died I was all set to talk to her and try and get some closure with her about final wishes, etc but she was one step ahead of me and I had no idea she was dying that day because of HIPAA and they didn't call us to tell us.
The only thing we always said when we talked for the few short minutes everyday was I love you and I am slowly accepting that these 3 words were enough for her and for me.
You and your mom are in my thoughts today. I hope mom starts to settle down more and has a peaceful passing. I am sorry you are going through this agony watching her and not being able to help the way you want to.
When my mom’s hospice agency workers were just coming by to “check a box” and her hospice nurse acted lackadaisical about Mom’s pain, it occurred to me that these people would be her last medical crew and that she deserved better. I hired a different hospice group and the transfer was unexpectedly simple. I’m in Tennessee so it might be more complicated in other areas.
Hugs and prayers for you, Lily!
I’m so sorry that you are going through all of this. It’s an awful situation to be in.
Sending a bazillion hugs, prayers and support your way today.
It’s not peaceful at all. Now I’m alone with her. Her pallor is yellow and the hospice literature says that could mean she’s hours or days from death. It sucks that I’m getting my information from pamphlets.
I've also notified a couple of very close people and getting denial, or “get her to eat something” (save her). I can’t manage other people’s emotions right now.
Edit: I did talk to a compassionate hospice nurse last night (after trying to reach people all day). She said they could probably get the doctor to order a catheter on Monday, but Monday is forever away.
They are to come out anytime you ask them to, so make sure you're putting your foot down with them as you are the one who hired them and they now work for you and your mom. So don't let them bully you around. You should be the one calling the shots, not them.
And you can start by telling them to call the doctor now(as there is a doctor on call 24/7)as you expect your mom to have a catheter placed by this afternoon.