Grandmother (85) with dementia and blood disorder that requires 2 units transfused every 2 weeks. I'm 37 with husband and no kids. Advice?

I will tell you what my RN daughter who has worked in NHs would say, put her on Hospice.

What is curing her going to do. The woman's brain is dying. The only think keeping her alive is the blood transfusions. And how is she when receiving them.

Hospice in the home is mostly left up to the family. A Nurse comes maybe 3x a week but should be available 24/7. An aide comes for bathing but maybe able to stay longer. You can hire extra help with Gma's money. Medicare pays for the care but not the facility. So if grandma goes to a NH her rent will be paid by her. Not sure if you can get Medicaid help if she is already on Hospice.

You do not indicate what medical problem Grandma has.
Is she able to voice an opinion on what is being done? If so let her choose what to do and what not to do. (The NOT to do is just as important maybe even more so than the what TO do)
If grandma has dementia putting her through all those tests are for what purpose?
Does she understand what they are all for? Does she comply or does she have to be sedated for some of them if not most of them.
Does she even allow the transfusions?
If she has dementia, if she has to be sedated for the tests, WHY do them?
Will anything CURE her as well as the dementia. (answer to that is a resounding no)
I would contact Hospice.
Care for her and keep her comfortable.

If this is your husbands grandmother let him take over the care, the doctor appointments, let him sit there while she is transfused, let him sit there while she wakes from sedation after another MRI, CT, Scope exam ( from any direction)

Doctors do not seem to understand the difference between the QUALITY of life VS the QUANTITY of life.
To refer to Hospice is "giving up, a failure" of medical practice. What it is is realizing that we all die. And to put someone through what your grandma has been through does not make sense.

Whoever has POA should be the one that is making the decisions as to what the next step is. Keeping in mind what grandma would have wanted if she could make these decisions herself. Did she ever say..."Keep me alive at all costs" or "Don't hook me up to machines that will keep me alive" Let those ideas be your guide. If she never said anything just think about comments she made, the life she led.

Options might also be...
Have caregivers some in and help care for her.
Place grandma in a Skilled Nursing Facility where staff will be there 24/7 to care for her.

Grandma needs to be in a facility. If you haven't done it because hubby is against this I would also rethink relationship with hubby too before potentially having kids with a man like this. If he is unable to be empathetic about this situation and have concern about you and the stress you are under imagine being tied to him with kids too. I can't imagine having to clean up after an elder who is incontinent for what seems like forever. I totally get your frustration when doc mentioned a new med which would not take any of the caregiver burden off you. Thus the recommendation to place her now because you have reached your limit. With all her ailments and her surviving she could live another decade. It's happened to many people on this board.

Do you have POA? Have you talked with her oncologist or PCP about consulting a hospice or palliative care team? I think it would be beneficial for you to talk with them, even if you don't choose that route it would allow you the chance to hear different opinions about treatment outcomes. At some point every one reaches an age where it's difficult to outpace underlying disease.
You have worked like a hero to take care of her--I'm not sure where your husband's coming from. Since her care needs have outpaced what you can provide then it's time to consider a skilled nursing facility and or hospice/palliative care.

girl it’s hard, but there are resources and help out there. Where are you from?

Doctors are ALWAYS going to push for treatment because that's what they do for a living. They treat. They over-treat. Many are of the mindset of "do everything". They give out false hope. You have done everything reasonable to help her. The "NEW DRUG" does not sound reasonable.

You have *not* reached the end of life by any stretch of the imagination. But your grandmother has reached the end of hers. You do NOT have to continue treatment. At this point, it sounds like she should be on hospice.

Your husband clearly does not understand. It was cruel of him to say what he said. You should tell him that what he said hurt your feelings and was not at all helpful.

You must put yourself first now i.e. this instant. You matter. Get yourself help today. Call a friend. Call a therapist. Call your pastor. Do something to help yourself first and before anyone else.

Your anger at the situation is justified. The situation with your grandmother is not going to get better if you hurt yourself. Please don't do anything drastic or foolish out of burnout. There is a light at the end of tunnel. I promise.

A new drug that may help what?

May extend her life?
May improve her quality of life? - beyond reducing the need for transfusions, I mean.
What does your grandmother think? - if your grandmother isn't able to express herself, then try to put yourself in her head and do it for her.
And what does that "may" mean? What's the evidence?

I can't think what your husband is thinking. Does he understand what her oncologist is prepared to put your grandmother through?

Only... Please. She isn't a parasite. The objection to heroic treatment is that it may not be in her best interests.

You have done enough and are now paying the price of extreme burnout. And sadly you have an unsympathetic husband, who I can only guess if had to do what you do on a daily basis wouldn't make it past day 1.
It's now time to say enough is enough and make yourself a priority, by placing your grandmother in the appropriate facility, so you can get back to just being her granddaughter. She would not want you being this miserable, nor should your husband, as I'm sure this effects your marriage as well.
After you place your grandmother, you may want to look into getting yourself some kind of therapy or counseling, to help get yourself back on track with enjoying your life. And in the meantime, if needed you can always call the Suicide Hotline at (800)273-8255.
Please take time today to do something just for you. God bless you.

Please don’t shoot yourself. Your life is important and valued.

It’s clear to me that you’re at the end of your rope in regards to your grandmother’s care. You have done such a wonderful and dutiful job looking after her, but I think it’s someone else’s turn now. It’s time that she be put into care, and for you to regain your life. This doesn’t make you a bad person. It means it’s your turn to look after yourself for a change, and find a life that’s worth living. I assure you it is.

Asking for help is such a brave first step. Please seek a placement for your grandma, and talk to your own doctor about your feelings. We all feel that way sometimes, and it’s nothing to be ashamed of. People care about you and love you, and you’ve worked so hard. Time now to cut yourself a break.

We’re here for you. We’re all rooting for you to be brave and hold out until she gets placed. Please keep us updated.

HUGS, my friend.