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.
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.
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?
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.
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
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.
🙏
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.
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))).
May The Lord give you comfort, strength and peace during this new season.
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?
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