My mom has weeks (maybe months) left to live. She is 76 and has been diagnosed with a type of sarcoma that produced a 9.5 x 9 x 5 inch tumor in her pelvic region. I am single and work full-time. I want her here with me, but I am petrified about what we are facing during the near future.
She is currently in the hospital, and they drug her up so much with pain medication. It breaks my heart to see her eyes glaze over and to "lose her" for hours every time they give her another dose. It equally pains me to see her in pain.
If she isn't drugged up, she's able to slowly get up and walk (with assistance) to the bathroom, where she will usually brush her hair and teeth and look sadly at herself in the mirror while moaning with pain. It is during this time that we have brief conversations about the things that are important to her.
Once she takes her next dose though, she is in and out for hours with little to no conversation.
She eats at every meal, but it is only a fraction of what she used to eat.
I would really appreciate any words of wisdom to help us through this next phase. I am so scared and sad about where we are and what is to come.
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In time things will balance out for you a bit. The rawness will begin to fade. Perhaps you have already experienced some of that. Some pain is visceral and doesn’t pass so easily from our minds. I encourage you to get some therapy to help process not only moms passing but the fact that you have been through perhaps a PTSD experience.
There are many home caregivers who are at a loss when loved ones are transitioning. Good that you posted here and had some on point feedback from forum members and that you have returned to give us an update. Your post will help others.
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We on Forum are now aware that Hospice is anything but what it was meant to be and what it once was. When I was a practicing RN it was a godsend when Hospice, first started in Europe, came to the United States. The mission of those working in it was the mission of caring for those and their families who entering the end of life stages, to provide complete care, physical, pain relief, mental and emotional. support, guidance. The relationships formed with families, the end of life, peace and freedom from pain was nothing short of miraculous and the workers were dedicated to the mission.
It is now a part of the military industrial complex, an ugly FOR PROFIT model that allows whatever support is dictated on paper: two to three baths a week, one hour RN, an (often totally inept) Social Worker who may call but is unlikely to be able to help, a call from clergy and the only blessing in this, the bottle of morphine with a dropper. That's it. And as to the help that they used to provide at any hour of any day. Nope.
I hope you will stick around so you can inform people what they might expect. And what they cannot expect. And exactly how to melt down appropriately for the sake of their loved one.
This old RN just lost a dear friend at home on Hospice. The care was utterly awful, to be honest, and for this Medicare pays an enormous amount.
It breaks my heart to see this. I am assured that there are still some caring folks out there and some good hospice, but my own friend and fellow-RN, who entered hospice care at once when it came to the US, worked in it for a long time--she left because of the inadequacies we now see.
We are finally seeing some writing about it, and Lealonnie2
recently posted a New Yorker article which is down in ]"Discussions" threads.
Again, I am so sorry for your loss, and so sorry you had to be forced into screaming meltdown, but quite honestly I recommend that to others to get attention for their loved ones that they deserve, and that the system is paying for.
May The Lord give you comfort, strength and peace during this new season.
My mom declined so quickly. It was more than I could handle on my own. I called hospice for help - but because it was the weekend, they seemed unable to assist.
I ended up having a meltdown to which they finally responded. Once they came to the house, it was decided to have an ambulance take her to the hospice IPU.
She died two days later. January 9, 2023.
This has been such a traumatic experience. If anyone on this forum is ever in a similar situation, I want to be there for you. I don't ever want anyone to struggle like I did. Please reach out.
Please let go of feelings of guilt! We have a poster, Alva; she's a retired nurse. Alva says that we mix up our "G" words. It's not guilt, it's GRIEF.
Please make use of the Hospice social worker to discuss your feelings and needs during this roller coaster time. (((Hugs))).
If it becomes difficult to manage at home talk to the Hospice Social Worker or Nurse.
One of the GREAT benefits of Hospice is that Medicare (or Medicaid) will pay for about 5 days of Respite care. Often that is in the Hospice In Patient Unit. Often a patient is transferred there to manage pain or other symptoms but if there is space Respite can be done. If there is no bed in the In Patient Unit the Hospice can arrange a stay at a facility that they have contacts with. (or one of your choosing) So a Stay in a facility would not be paid for all out of pocket some can be charged to the Respite stay.
One of the things Hospice is very good at is helping the whole family not just the patient. They are there to support you.
The hospice nurse came by a few hours later and walked us through a lot of things. We reduced the amount of medications so that she is able to talk but not be in pain.
I work from home, so I will always be around for her, but it will affect my job performance a bit. As per recommendation on this forum, I will start to locate some additional home help now, so we can be prepared as things get more difficult. Every step in this journey has been incredibly hard, and I know the most difficult part is coming soon. If it reaches a point where I can longer cope, I might look into a facility. The issue with that is the expense and the fact that I can't concentrate at work because I'm worried about what is going on with my mom. The guilt I feel can be overwhelming too. The nurses at the hospital were kind and did what they felt was best, but seeing her there in a coma-like state because that is easier for caregivers just broke my heart. In just the less than 24 hours that she's been home, we have had some good laughs, argued a bit, and talked over some things more than we did in the two weeks she was hospitalized.
Also - hospice should be able to supply you with 5 days of inpatient hospice if an emergency strikes you. And as at that point you'll know what med volumes work for your mom you can inform her care team of that, so it wouldn't (well shouldn't) be a case where you have to put her into inpatient care and she's zonked back out. <3 I know they can do it a few times, I just don't *actually* know the rules about it, as I haven't used it yet
My husband had to drive himself to the ER with a kidney stone attack when my mom was in her final days of hospice, because it wasn't safe for her to be alone anymore.
Do you have someone you can call on to fill in taking care of mom should YOU become ill?
Hospice will be wonderful.
They will arrange to have all the equipment that you need to care for mom in place.
A Nurse will come at least 1 time a week, m ore often if needed,.
A CNA will come a few times a week to help her bathe and to order supplies.
You can also ask for a Volunteer to come and stay with mom. The Volunteer can not do "hands on" care but Volunteers do a wide range of things. Ask for what you need.
About hiring caregivers.
IF you hire through an agency the caregiver, unless they are licensed to do so can not give medication, they can remind someone to take medication but they can not physically give the medication.
If you hire privately you can instruct the caregiver to give medication.
Hospice can help with the proper doses of medication so that mom is comfortable but not "out of it". Although as someone reaches End Of Life they will sleep more and this is normal. Keeping the body functioning takes a lot of energy and it is easier to not expend energy keeping yourself awake, the energy is spent pumping the heart, breathing, keeping other organs functioning.
Your mom is lucky.
This can be daunting task to take on but caring for a loved one has it's rewards. You know she will be cared for and comfortable in your home more than she would in the hospital.
🙏
I hope she is.not already at home.
Why do you want to bring her home? Because of the meds she NEEDS to.Keep her comfortable?
I would recommend hiring someone to stay with her and care for her while you're at work. Since she's on hospice, Medicare won't pay for the "room and board" part of a care facility. It may be less expensive to hire someone who can help her out. Is there a family member who might be able to pitch in, either by doing the work or helping financially?
This is going to be hard. Lean hard into the hospice services, because they're there for you, too. They won't be there in your home, but they'll offer counseling, a chaplain, a volunteer to sit with her. Unfortunately, most of the care will still fall to you. So I'd line up help as soon as you can.
The care facility is another option; hospice can be given there. Given your work situation, it might be the best answer if you can afford it. I'm a hospice volunteer, and some places are really nice, and some are awful. I hope you can figure out the solution, and that your mom's transition will be as painless as possible. I'll be thinking of you.
Before you move mom into your home, I think you need to have an honest discussion with yourself on why you want to make that move and what that move might look like.
Are you wanting to move mom so she has a more comfortable environment? Or is it the administration of pain medication that is driving this decision, because that is what you mainly reference. You say they "drug her up with so much medication" and you "lose her" for hours; but you also say that when she doesn't have pain medication and gets up and walks around (with assistance) she's "moaning in pain". It sounds to me that she is receiving the pain medication she needs to keep her comfortable; at this point that should be the number one priority.
So, if she comes to your home on hospice care, you will be responsible for about 95% of her care needs - including the administration of pain medication. Are you willing and able to do that? What will be your plan for her care when you are out of the house? If she can't walk without assistance, that will likely mean adult incontinence products - ie. Depends - that will have to be changed. Are you willing to do that?
My mom passed at my home under hospice care. I was her primary caregiver; but I am retired and was able to be with her 99% of the time, and the other 1% (like running out to the grocery store or pharmacy) my husband and kids were there to keep an eye on things. And my mom was mobile (able to get into the bathroom by herself) up until she was actively dying. But I'm going to be honest with your - while in hospice, the worse my mom got, the less I was able to leave her alone; she became housebound, and by extension, as her caregiver, so did I. Are you prepared for the same thing? Unless you have the means to hire aids to come into your house to give her care; but I was looking into hiring nighttime aids just before my mom started to actively transition into death, and there is a serious shortage of caregivers out there to hire. It's not an easy thing these days to just make a phone call to an agency and expect them to have a caretaker on your doorstep the next morning.
I'm not trying to be harsh or cruel here, I can understand the very visceral reaction to want mom in your home where you can keep an eye on her and give her better care than, frankly, she will receive anywhere, because she will be your only patient and your only caretaking responsibility. But that choice comes with a heavy price to pay that not everyone can afford, either financially or emotionally. So, my words of wisdom to you are to think this all the way through, including the many things that can go wrong and make an informed decision rather than an emotional one.
This is important. Are you already taking time off to care for your mother?
I am inexperienced with hospice in the sense of - the end result, but my mother is here with me on hospice. She's been having trouble recalling information accurately and no longer needs her BP meds, this is apparently normal - ish from what im being told. its hard because my mom is awake conscious lucid and HATES being talked about when shes in the room so the only itme I can get clear info from nurses with the depressing details, is via texts.
This is a fantastic group of ppl though that have a wealth of info and experience. So, you will not be alone. <3
Who is going to care for mom while you are at work?
Has anyone suggested that perhaps being in a care facility would be a better idea?