Struggling with decisions for my 94 yr old mom who was given 6 mos in Jan. She lives over an hour away. I'm killing myself weekly trying to live 2 lives, back and forth over hill and dale. Mom wouldn't move when Dad died 5 years ago. Dad had dementia and I saw him thru, but it's been 10 years now caring for them both from afar. I was blessed with great parents who I'd do anything for. There's no abandoning and mom won't leave her home to come live with me. It's put a great strain on my life. I feel guilty for wanting it to end. She refuses hospice and the hospital. The day may come I will have to dial 911 and she will be rushed to the hospital and in all likelihood die there. Mom is leaving it in God's hands. This woman prayed for me all my life and I believe she saved me. I'm trying to orchestrate her end and it's not going well as I'm very confused and can't decide. I feel hospice is the best bet but then feel weak for not having her faith. She rallies, I've read so many do. June is 6 mos. If anyone listens to me I've been saying she's dying for years. I pray for direction but get mixed answers. This is so hard. How do I free my head up and how long do I keep sitting on the hospice fence?
I had her convinced to do hospice after making her cry! I then told her forget it, she has to decide not me. Everyday I'm back and forth with decisions in my head. Did anyone just ride it until the wheels came off so to speak? My husband has worked hard for ten years now letting me stay unemployed to care for my parents. It's put a strain on my marriage but he does support me. Everyone tells me I'm blessed to have a mom still, but blessings of an old age come at a price. Mom has had her lung drained twice in 6 weeks and don't want to do that anymore. Her legs and feet look like tree trunks now. Drs said nothing to do now but comfort care. I'm so tired mentally and physically.
Remember that Hospice means end of life. That no extreme measures will be taken to save Mom. Its all about comfort. Morphine is given for breathing as well as pain. To keep her comfortable, she may sleep alot. As you said, its all up to God now.
It is a terrible decision to try to convince someone what they should do about hospice or DNR if they are in their right mind. That is a their own right. You WOULD/likely should feel guilty if you convince your Mom to be DNR and on hospice when that isn't what she wants.
You clearly are overwhelmed and need help. Mom may wish to stay where she is but that may not be possible. You need to see someone to help you comb through your own limitations and what to do about them, how to explain them to your Mom.
Your Mom has had her life, and was apparently/is now very loved. She is lucky. That doesn't mean you get to/have to cast yourself upon some martyr's altar for her at this time. You are there to help, to monitor, to help her find a safe placement or situation but you are not and should not be there to be her 24/7 help now.
That your Mom is the age she is, and had clearly both left and right heart failure (left affects lungs; right affects extremities and abdomen) means this is a situation that does have self-limitation already in place.
I would firmly and gently explain to Mom what you told us. Your husband has worked hard so you could do this care. You are not getting younger. You cannot continue as you have been.
Not everything can be made perfect. Not everything can be fixed. Some things must simply be acknowledged and grieved. It is worth grieving about. Be honest.
And again, I think honestly you should consider a therapist (often Licensed Social Worked certified and trained in this work of life transitions therapy is best) to help you. We are just a Forum of folks who have seen a few things through living. Not experts.
As to your feelings about wishing your Mom were at the end of suffering, what kind of human would you be if you were not tormented by seeing her go through this, if you didn't wish for her rest at the end of a long life, if you didn't feel relief when Mom is gone and you never have to witness this crucible, never have to fear for her again?
You have all the facts and you are still struggling without a way forward; I think you would greatly benefit from the help of an expert.
I so wish you the best.
Best out to you all.
Your mother wants to be done with life -- I get that -- but she's also being incredibly selfish by expecting you to shoulder all the burdens that go along with supporting a dying person, and that's not fair. I'd suggest you find whatever gentle way you want to convey that message, but convey it you must. Does she really want you to be sitting next to her as she's gasping for air and drowning in her own juices, helpless to do anything to ease her suffering?
My mother also died of CHF last summer under hospice care at her nursing home. It was peaceful, she had a bit of oxygen here and there (though she kept yanking out the canula, so they gave up), and she had morphine and the anti-anxiety medication they routinely give. She was semi-conscious for about two days, less so the third day, and she died early on the fourth day. She was not drugged into those states; it was the natural progression of her death. My brother and I were with her, but the nurse was close by when we needed her, and she administered the medications. (I did all that for my dad four years ago, though, when he died at home on hospice care.)
Hospice is not only for Mom, but for you, the family. They're there to support you as well, and you might point that out to your mother -- that you could use some professional back-up at this time.
If she relents again, run with it and get her signed up. I disagree with the doctor regarding for-profit vs. non-profit companies. I used three different for-profit companies, and the first -- Vitas a nationwide company -- was terrible. The other two were spectacular, and both were for-profit. You just need to do some research, and if you don't like how a company is handling her case, don't worry about firing them and bringing in someone else. I actually used Yelp to find one for my dad, and I used the company used the most at Mom's memory care for her.
Hospice took no measures to 'hasten her demise' either; they just kept her comfortable w/o poking and prodding her. She went to bed on a Tuesday b/c her heart was giving out and she was exhausted, and passed away one week later. Hospice brought her a hospital bed, medical supplies, comfort care, emotional support *for her and the family members*, and helped ease her transition w/o making it more stressful for all concerned. God took her Home, is what happened, nothing else.
The only 'blessing' here is that you have the ability to keep your mom OUT of pain; witnessing such a decline in an elderly loved one is stressful and painful beyond belief. People reminding you how 'lucky' you are to have your mom in THIS condition have no idea what they're even talking about. What we want at this stage of the game is peace and comfort for all involved; that's the only goal. I prayed daily for God to take my mother out of her misery, not to extend her life by one single minute! Try to stop listening to what others have to say on this delicate subject, and follow your own instincts. Let love prevail now, not guilt or misguided 'good intentions' by others who are clueless about what's going on.
Wishing you the best of luck with a tough situation. Sending you a hug and a prayer for peace.
Your right, Gods going to take her when it's time and all moms and my struggles will be put to rest. I'm hanging in there and I'll continue to be there for her no matter what. Sorry for the loss of your mom. Thanks for prayers and hugs.
There will be someone that will come in on a regular basis, a nurse 1 time a week, if needed more often.
A CNA that will come in at least 2 times a week to bathe mom, and change bedding if that is needed and the CNA will order supplies if any are needed.
Medications if any are needed will be delivered, no need to run out to get them.
And supplies will be delivered, again no need to run out for them.
One of the nice things is you can request a Volunteer that can come out, usually 1 time a week to sit with mom and keep her company. Often, if requested they can do a light load of wash or light house keeping.
And one of the goals of Hospice is that no one dies alone. Volunteers are trained to help out offering support at end of life. So a Volunteer can be there with mom until you get there when that time comes.
Not only will Hospice support mom but they are there for you and the rest of the family.
I suggest that you try it for a while, give it a month. If it still does not feel right to you you can drop the Hospice service.
And no 911 calls. If mom is uncomfortable and you can not make her comfortable at home a transport to the Hospice In Patient Unit will be ordered and the staff there will help with round the clock care that is sometimes impossible to do at home.
It sounds like moms done with the hospital and there procedures. Hospice is the correct way to handle her God given choice.
The pain meds they’re giving her are not poison in the doses prescribed. She doesn’t have to take them. They are there if she requests the. Jesus asked for wine on a sponge before he died, so I’m sure he would have compassion.
If there’s some routine med, be it lasix or whatever, given for the edema, hospice almost certainly will approve it as they do ceplosporin antibiotics for utis. For sure have an understanding beforehand as to what drugs they intend to continue.
You will have a nurse, bathing aides and volunteers multiple times weekly, in addition to a social worker and chaplain who can not only help you process feelings, but provide leads to various resources.
There will be someone with her through the active dying phase, and someone on hand to call the designated funeral home. There will be no risk of having to dial 911 and have this end up a coroners manner.
By all means verify this with hospice orgs you interview. I would stay away from Vitas or other big for profits as the more individualized care is in the nonprofits, but make sure the one tou hire is on board with all of it.
If you aren't her MPoA (or Durable), and she has all of her mind, you technically can't make her go anywhere.
If you called social services for her county there is a possibility that they would consider her a vulnerable adult and move for emergency guardianship and then decide to move her to a facility, but I'm not very certain and I think it depends on her state and county. But seeing if she can get hospice at home through the county may be the only remote possibility. Honestly I can't image they'd allow her to stay there unattended in her condition. Their definition of a "vulnerable adult" isn't just cognitive, it's medical as well.
If your mother is 94, then I'm assuming you're in your 60s or 70s? Are you retired? If you are, is there any option for you to move there temporarily and set up hospice at her home? What would keep you from considering this option?
If you're still working (full-time) can you apply for a leave of absence or Family Medical Leave (if you work for a large employer)? Your mother's finances should cover the expense of your time with her, if she has the funds and you are her FPoA.
I'm a small business employer and over the years have permitted Leave of Absence to employees when they needed it, even though it was a burden on our staff and business -- it's a mercy that everyone needs and should ask for.
I'm so sorry that you're in this conundrum. I hope a solution presents itself soon.
Perhaps your mom believes the same.
In the past few weeks I’ve been confronting the possible use of medication that as it relieves my LO’s pain, may also hasten her death.
Through God’s Grace I was sent clergy people who talked me through my own reservations and helped me to understand that her rights to “natural death” would be respected.
I’m not sure why you think that hospice is in conflict with your mom’s unfailing faith. If anything, my LO’s hospice care confirms her life long belief. I know that she will continue to be cared for peacefully until she is taken.
Do you know why she cried when you mentioned hospice? If the word frightens her, don’t say it, as babsjvd mentioned. If she has any ambivalence about her death, hospice caregivers have the training and objectivity to address that.
I’m sure you know that hospice services CAN be dispensed with. Perhaps identifying hospice as something to try can be more comfortable for both of you.
In the meantime, I say the simplest prayer every week in Church- “Relieve the suffering of those who suffer, and hold those I love near”. I will think of you as I offer this prayer during our service this week.
This is not meant to scare you, but death by CHF can be painful and frightening for both the patient and witnessing family members. As the heart becomes weaker, and can't pump blood efficiently, the body begins to suffer from oxygen starvation. It happened to my mom. Fortunately, she had decided on home hospice, and I was able to administer morphine and Ativan to alleviate the pain and anxiety.
If mom refuses hospice, it is going to be very hard for her to stay home until the end. If that is what she really wants, I think you might be well served to call a few hospice companies that serve mom's area and talk to them. Tell them everything you and mom are going through and see what they have to say. Calling them doesn't obligate you and mom to use their services.
But keep in mind...whether or not you engage hospice services, there's likely going to come to a point where mom won't be able to be alone anymore. She will become a fall risk (if she's not there yet) and just the act of getting up to go to the bathroom or get something to eat is going to be too rigorous for her to be able to do. At that point, you and mom are going to have to come to a decision - either you stay with her, she moves in with you, or she has to be placed into a nursing home or hospice facility. Depending on your hospice's regulations, if she wants to remain in her home, they might insist someone be with her 24/7 if they are going to admit into their program.
If you decide to live with her in your or her home with the support of hospice, you will be the de facto "nurse" who will be in charge of administering the comfort medications. Will you be able to do that? It was a no-brainer to me, since at the end my mom was in real pain and I wanted to alleviate it, even IF the morphine/Ativan hastened her death by a short amount. Her passing was a difficult thing for me to witness, but in the end I'm glad I was able to relieve her pain and make her passing as peaceful as possible.
As harsh as this is going to sound, I would not have allowed my mom to stay in my home WITHOUT the support of hospice. I could not have stood by and watched her suffer and done nothing. I think it is very cruel of a dying parent to expect that from their children, because I think there is no way for those children to forget watching a parent suffer a painful death without intervening.
This is a very personal decision to make, and while I understand the compulsion to do as mom wants. you have to temper that decision with what's best overall, for both mom and you. But your first step to this is to make some calls and talk to some different hospice organizations, and get some of their feedback and ideas.
I wish you the best.