How do you make the changes when the person you care for is waiting for "miracle" and doesn't want to "give up to the illness"?

Jake,

Welcome to the forum. I am so sorry that your mom is in this situation and that your family is struggling to cope.

It made me sad to read that your mom seems irrational concerning her faith. Faith is comforting to those who believe and I certainly respect her belief in God. It doesn’t serve her well by taking God for granted. A miracle is a gift. We can ask God for a miracle but we can’t demand or even feel as if we deserve a gift. You could tell her that we can’t forget the words of Jesus, “Thy will be done.” We don’t always get what we ask for.

I personally believe that God gives us a brain to reason with, regardless of any beliefs in miracles. You are rational and it’s a shame that she doesn’t take a page from your book. You have tried numerous approaches but she won’t accept any of them.

I hate to make this comparison but I will in order to make my point. Her situation reminds me of a documentary that I watched on television once. A backwoods preacher held services with snakes. The congregation was instructed to handle the snakes to show faith that God would protect those who believe in Him. Well, needless to say, his congregation got smaller and smaller! Why? Because of snake bites! It was totally irrational!

I understand that you are at your wit’s end. I would be too. This is a sad situation all around and I truly hope that one day your mom will come to her senses and take some responsibility for herself, or at least become humble enough to make the changes you have suggested so she is able to have a better quality of life for the remainder of her days in this world.

You can’t ‘fix’ this for her. It really is hard to understand why some people think of God as a big slot machine or Santa Clause in the sky and feel that through faith we will get everything that our hearts desire. Life simply doesn’t work that way. Unfortunately, there are tough situations that we are faced with and acceptance is a very hard lesson to learn.

Wishing you peace during this difficult period in your life.

Imho, ALS is a fatalistic disease. Your mother is only fooling herself via a miracle mindset.

I didn’t recognise ‘ALS’ so looked it up. Has your mother read the fact sheet https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet

It makes it clear that ALS is progressive. Of course religion allows for ‘miracles’, but they aren’t very common these days. Have you talked to her Church people? Could you get them to help along the lines of ‘Hope for the best, prepare for the worst’? Actually depending on a miracle isn’t religious at all. ‘God helps those who help themselves.’ You can’t force God to give you a miracle.

You have to stop ‘enabling’ this behavior. If you damage your back, you, your mother and her own mother are in dire straits. I doubt that your 90 year old grandmother will be able to cope. Your mother will of necessity go straight to a nursing home, because that’s the level of care she needs. Whether you get a temper tantrum or not, you simply have to change what is going on.

In fact, a massive temper tantrum might be useful. If her behavior is bad enough, you and grandmother walk away. From the sound of it, even a day would then be enough to make it impossible for her to cope. You make it quite clear to her the conditions under which you are willing for her to stay at home with you safely. I’d suggest that you bring in an appropriate medico to tell you exactly what (if anything) would be necessary for this to happen.

Most of us start on this site first by reading, then by asking about our own problem. Helping others comes later. Thanks for having the courage to set it all out. Now use your courage to stand up for yourself and for common sense. Love, Margaret

Here is a "sneaky trick" that might work.

Explain that you truly do not want to destroy your mom's faith. She is probably happier thinking she will be healed.

Explain that your are having troubles with caring for her while she waits for her miracle (which may only come after she is in heaven).

Tell her exactly what you need to be able to "help" and allow others to "help". If she balks at "buying" items, most equipment and supplies could be "rented and returned" or "sold" when she no longer needs them. Then, you have the items you need to care for her without undermining her belief system.

As others have suggested, I would get the help YOU need so that you can continue to help her. I would present it to her that way - a special bed or lift device is a temporary bit of help for YOU. You can even tell her that this intervention was presented to you while praying for help! There shouldn't be any discussion, just do it.

You might also want to consult with her doctor(s) to see if they can recommend OT/PT - not so much for her, but to help YOU learn better ways to assist her, so that you don't end up hurting yourself.

Also, if possible, hire some help that can assist you and your grandmother. Bless your granny for doing what she can to help, but you need to ensure she doesn't overdo things as well, or you will have TWO old women to provide care for!

Care-giving should never become 24/7 for one person. It's great that your grandmother can give you a break, but you really could use someone a bit younger to give BOTH of you some respite! Again, stress to your mother, when you get help or medical devices, that these are for YOU!

She has strong religious beliefs in a miracle. You are looking at her illness from a different point of view, even if you believe strongly in miracles as well. Maybe try a conversation from a more middle ground. You need the bed for YOU to help take care of her while she is recovering. You need to make some changes in the house so that YOU can better maneuver to help her. If YOU get down in your back or it is too difficult to assist her with the current set up, you won't be able to do what you're doing right now. A little reminder for her: if I can't do this to help you, we will be in big trouble because no one else is going to help both of us at the same time. "I" need some help to help you recover. Your mom cannot afford to incur health or physical issues because then all 3 of us end up in a bad way. These are the things we need in order to help you get better. . .

You might also toss in a little alternative way of thinking where her faith is prevents her from seeing that helping those who help her does not mean she is giving up on her faith or belief in miracles. God gave people a gift of healing via doctors, care providers, etc. Many people get treated for cancer by way of medical assistance (knowledge of professionals, medical equipment) and come out the other end being cured. The power of prayer is not to be scoffed. The house remodels to make it easier for God's 'assistants' to help during the healing process does not mean she gave up or didn't have faith in God. Her constant prayers and her conversations with her God are separate from the earthly help she receives.

What you have here is an intersection of needs. She needs to be as independent in her decisions as possible because she is losing that in spades. You need to not get hurt while taking care of her. While her illness is a condition that both she and you can't be responsible for causing, allowing your mom to call the shots about a hospital bed, may lead to a back injury for you and the fault will lay at her feet for being uncaring to your concerns and you for allowing her to do so. When the decisions impact you negatively, you must defend yourself. So get the hospital bed. So whatever you can to make the experience for her as positive as possible. Then, address any other conveniences that allow you to safely care for her and make her care better. The alternative is that if you become injured, she enters institutionalized care where she will have far less control.

You can't do 24/7. If anything happened to you what would she do? Now go get the outside help and bring them in - if she can afford to pay - or probably given her illness aid may be available from your state.
As is said - many times the caregiver goes before the one receiving care - probably due to stress.
You seem young and strong but again you cant do it all. You are a grown up. Mom will accept care albeit grudgingly. Like a child - sometimes you just have to do what your adult mind tells you is best - you are no longer a child

She has unreasonable expectations of you and this did not happen overnight. Please at the very least get a hydraulic patient lift or transfer device. You only have one back and if you want to maintain a decent quality life for yourself, PROTECT your back. Let her throw her tantrum but explain to her that you will not compromise your own safety or that of anybody else.

I know where your mom is coming from. I grew up in a "charasmatic" church that taught if you didn't get healed it was your fault. I dealt with a horrible autoimmune disease that almost claimed my life. I went through all the things of throwing out verses to God, because this is supposed to make Him perform. I got angry with God. I thought I did something wrong to deserve this. Through battling this for 5 years, with my cute little family going on with life without me most days, I came to realize some things. Our ultimate hope as a believer in Christ is that we spend eternity with our loving Saviour and with those believers who have gone before us. We will be healed and delivered from our mortal bodies filled with sin and decay...waiting for the day Christ returns and even our mortal bodies will rise from the grave(or where ever because DNA is neither created nor destroyed) and be redeemed! I, in myself, deserve NOTHING good. However, through Christ, every good and perfect gift is from above. He promises there will be hardships in this life, but He promises us He'll walk through those dark times with us. James chapter 1 even tells us to take joy in trials...this is where we get to see God work, and all His wonderful people He sends to take care of us. We grow in faith going though these times, even though we don't like it. My 5 year struggle ended by me finally surrendering to the idea that I might wear a colostomy bag the rest of my life. However, God showed up and rescued me from this by them checking to see if I had enough healthy large intestine to hook to my small intestine. I did! I've been symptom free for 10 years this July!
Now I watch my 83 year old, faith filled mom who was healed of epilepsy years ago, have to struggle with Vascular Dementia. And I know we live in a fallen world with death, sickness, and sin. BUT Christ has promised that this life is just a flash in the pan compared to eternity...we all die...some younger, some older, some suffer, and others just die instantly. If your mom could see God's goodness and hope through this...maybe she would seek out help while still waiting for that miracle of healing on earth. However, she has that hope of healing for eterninty! She needs to do all she can and then let God do rest. God can heal through surgery, by His hand, through medication, and by death for the believer. Why do we cling to this wretched life so much? Because we were meant for eternity before "the great fall." Your mom needs versed in sound doctrine. I'm sorry you're having to go through this.

My husband walked out on a doctor after this conversation:

DH: Jesus is going to heal me.
Dr: Jesus hasn't healed you; you need me, I will heal you.

Two years later, my husband has now realized that his window of opportunity for the surgery has passed, he never got the healing he was believing for, and unless there is some divine intervention, his life will be over within two years.

All the tools he needed for getting better were available to him but he chose "faith." Oh, and then he said that he isn't healed because of MY lack of faith. You really can't reason with someone who lives in the land of "the Lord told me" but won't listen to others that same Lord might send their way.

Take care of yourself and do what is right for you.

Great responses so far. I was just wondering if her doctor would go along and say he is prescribing an electric bed “for the time being.” Also, if you have chance read Tuesdays with Morris about a man with ALS.

I am going to make light of this only to get my point across... there is a joke I am going to try to recall...
Torrential rains, a man in his house and the house is flooding. the police come by in a boat and tell the man to get in, he says.."No! God is going to save me.
The rains continue, the man is on the second floor of his house now. And the police come by again in the boat and tell him to get in, he says.."No! God is going to save me.
the rains continue, the man is now on the roof of his house and a helicopter hovers over head and a police man lowers a harness and tells the man to put it on, the man said "NO, God is going to save me".
The man drowns and upon arrival at the pearly gates he says.."God, you let me down, I thought you were going to save me" God replies "What did you want, I sent 2 boats and a helicopter and you did not accept the help I offered"

The items that will make caring for your mom are not meant for her to "give up" they are TOOLS that will enable you to care for her better, safer that in turn will help keep her safe and will enable her to "fight" longer.

I am fully aware that you mom would not accept Hospice in order to help her live a safer life BUT Palliative care might be an option. If she would accept that if you can get a Chaplain in that could talk to her. If that is not an option if you can get her Spiritual advisor to talk to her that might help.

But you need to protect yourself and keep yourself safe when caring for her. Ask her what she wants to be done if you get hurt caring for her and you can no longer do what needs to be done. Ask her who she wants to come in and help or where she wants to be placed when you can no longer care for her.,

I understand what you are describing. The folks that claim faith is their reason for this mindset, often refuse to accept God’s answers to their prayers. They feel if they don’t truly believe they will not be healed.

This has been my Mom waiting for the return of my Dad as he is days from leaving this world. She finally says,” perhaps God wants me to not have to keep going like this anymore.” Mom has been caring for him in a bed in the dining room for 5 months. We have hospice care but she doesn’t stop. He’s been her life for 63 years.

Clergy and church family have made a difference in her acceptance. It still had to be processed at her rate not mine. With therapy I was able to turn my frustration and anger into compassion for her. When we tell people what they should see it usually doesn’t work out. Instead we need to help others see it for theirselves.

Make your boundaries, pray,
forgive, and seek others that can support you in this most difficult time. You can only change the things you first accept.

You say that your Mom is a deeply religious person. If she attends church regularly, can you speak to her minister/pastor/priest and have him/her help you by counseling your Mom? Does he/she offer pastoral counseling?
I know this is a difficult situation.

Best wishes.

I think in this case acknowledge her views and concerns so she feels validated. But then YOU must set boundaries that if you are taking care of her and it is affecting your body, then YOU must have the items that she needs so YOU can handle it more easily. Explain you have a bad back or other problems and these items are necessary so you can take care of her better. If she rants and raves, just ignore her and go get them. I don't see ny other option unless putting her somewhere.

It feels a lot more justified to be emotionally abusive when a person can play the 'poor dying victim' card. That's not to say your mother isn't suffering and/or dying, just that the victim card/guilt card is EASIER to use on you now more freely, because you feel even more indebted to her and wanting to help her than ever before. If you don't feel the word 'abuse' is accurate, then use whatever word you like to describe how she's making you feel. But, at the end of the day, you're feeling badly and that's not a good thing. How do you change these dynamics?

I think NYDaughterInLaw hit the nail on the head, personally. Why do YOU have to bleed in order to help HER? What good does that accomplish? When she dies and you're left with a broken back and a crushed soul as a result of her antics, then what? Do what you need to do NOW to ensure that won't happen down the road.

I seriously doubt your mother will agree to hospice, if she's anything like my mother, who'd rather suffer agony than 'have her slip show' by admitting she's approaching the end of her life and needs hospice help. "What would others think?" That's her main concern; that she has to Look Good no matter what, never mind that she's in a wheelchair full time and can't even sit up straight in that wheelchair for having lost core strength from her refusal to do physical therapy. Anyway, that's a subject for another day.

If your mother wants you to need a chiropractor and a back surgeon as a result of caring for HER, that's selfish. Period. Don't allow it. Do what you can and nothing more. Hire in home help, get the renovations under way, buy the medical equipment she needs and when she balks, she can go into Skilled Nursing for her care moving forward.

We all have choices in life and in death. I'm sorry your mother has such an awful disease as ALS and I'm sorry that you are being made to pay the price for it. I hope she gets her miracle, too, but if not, I hope you can do what's required to save your own health and sanity during her end of life journey. Best of luck.

If your mother doesn't want to show less than perfect faith by relying on mundane support for her day to day needs, that's her choice. You can't interfere.

You *are* mundane support, though. Electric bed, your back muscles. Neither is divine or immortal.

Get the aids and adaptations you need to supplement your muscle power, and tell her to stop talking tosh to you about how much *your* back can cope with. You shouldn't be lifting her manually anyway, it isn't safe for either of you. If necessary, get a God-fearing occupational therapist in to back you up - I'm not being sarcastic, why shouldn't there be plenty of them?

PS I completely sympathise with the frustration. Otherwise delightful client C told me she was desperate to get upstairs and get back to her proper bathroom. I glanced towards the staircase. "Have you considered getting a stairlift?" Oh no, she needs the stairs for exercise to keep her leg muscles strong as soon as she's fully recovered. Well a) full recovery isn't really probable; b) having a stairlift does not mean you are obliged by law to use it every time; and c) how about that shower you're so keen on, then? But no, role boundaries mean I must nod and smile, nod and smile...

Always meet her where she is and respond with what she wants. You can not change her mind. We all have a Spiritual Need. Consult with a Hospice Chaplain.

If she is religious of the Christian variety, she needs to be reminded that even Jesus asked for help. He even had 12 guys helping him out on the regular and lots of other people surrounding him. So God gets that humans need help. Also, you have to try to convince her that having faith means accepting the assistance that the Lord has put there for your use. This includes medical interventions and devices. God doesn't ensure a cure, but may just give us enough assistance to help us along. Or as a brilliant songwriter once said, "You can't always get what you want, but sometimes, you get what you need." Hugs to you, my friend. It's a tough road.

Remind her God only helps those who help themselves
and using you (and her 90 yo mother?!?!) as crutch isn't what God had in mind.
Not to say that the miracle wont happen, but while it's on hold, why not make use of some gadgetry to make everyone's life a little easier: such as a power lift recliner, strategically placed grab bars, a bed assist handle, and toilet seat riser with handles-just to name a few.

I’m praying for you and your mom. Is she on hospice? They have saved my 2 sisters and i from losing our minds. They are a wealth of information for my mom and the whole family. You need help- this is hardest thing ever 😥❤️🙏🏼.

Jake,

Yes. Giving these truths to your Mom will be “brutal”. But, ya know what else will be brutal? You throwing out your back and being stuck in bed yourself.

Being on muscle relaxers and pain killers can take the most hearty of us out of the game, and will certainly take YOU out of caregiving.

As people here told me, “Put on your own oxygen mask, FIRST.” If you’re laying on the ground, you’re no help to anyone else.

Best wishes to you!

Tell her that while she waits for her miracle, that you need her cooperation in getting whatever durable medical equipment and small renovations done so that you can help her without injuring yourself. Period. If she refuses then tell her that you will help her find a nursing home where she can continue to be in denial. Her needs are only going to increase and it will consume your life. You deserve better.

We find ourselves in this same situation with my MIL. I say 'we' but it's just my DH. I won't/can't DO for her anymore.

She is not sick at all--just aging, almost 91 and living alone. The covid shutdown took her from 'cranky' to 'impossible'.

She won't leave the house. She won't let anyone in. She really CAN'T take care of herself and wants SIL to do everything she can and DH to do the rest. He doesn't even do anything at OUR HOUSE!

My guess that along with age related issues, she's really, at the core, very angry and unsure of how to handle that. Being very angry all the time is exhausting. It does, however, keep people away.

My MIL wants DH to put 'grab bars' all sound her house so she can skitter around w/o using a walker (which she NEEDS, but won't use). He has refused, mutiple times as they really are not the appropriate thing to have.

Trying to set boundaries with someone who is petulant, angry and mean is next to impossible. Keep trying, tho. She blew through MY boundaries and I walked out the door a year ago. I support SIL and DH distantly, but will never set foot on her property again. Sometimes people never accept them.

I'd get your poor mom out of the CG situation as fast as I could. Good heavens--does she expect her 90 yo mom to lift her? Bathe her? I'm BAFFLED by this. My 91 yo mom cannot even make a phone call w/o help.

I am only 65 and already making HUGE changes to my living situation (New house, NO stairs! No lawn, or just minimal! I had cancer a couple years ago and while I came 'back' I did not 'come back' 100%. I'm running at about 60% of normal and that's the best I can do. accepting limitations and planning for the future so I'm NOT a burden is what people DO--doesn't she get that?

As sorry as I am for the dx of ALS, we all die sometime. She can choose to go gracefully or angrily.

I don’t think adult children should become a caregiver to an abusive parent (as you admit she has always been throughout your life). I definitely don’t think you should have to deal with her every day.

I vote for saving your back and your own well-being by declining to be further abused by her. Time for a completely different scenario for her, in my opinion.

ALS is a very difficult disease to live with and very difficult for the caregiver to witness. My grandfather died of ALS in 1952 at the age of 62, and although he and g'ma were very religious, no divine intervention. To this day there's been no progress in a preventative or cure for ALS. It's sad that those so young, and 57 is young, are afflicted with this and so many other non curable diseases.

It's unfortunate, but religion often times gets in the way of proper patient care and a patient's acceptance of their fate. I would think that they would welcome death and look forward to a glorious after life in His presence. Maybe you could even use that approach with your mom. She is not surrendering to the disease, but to the will of God and the relief of pain and suffering she will experience in the afterlife.

You have already been offered good advice in previous posts. As for yourself, make the changes you need to make for your sake. Building a handicap ramp, for example, is not for the patient's benefit, but for the caregiver's. You can do nothing for your mom at this stage, so do what you must for your benefit. As for you, Jakey, and other caregivers whose LOs are in an advanced stage of a disease, your focus should now be on you and your well being.

I agree to tell her the adjustments are not for her, they are for you. And boundries.

You do realize that Moms care will get to the point that she will need care in a Skilled Nursing Facility eventually? The only person I know who was able to care for her DH with ALS till the end was a Nurse. She also had friends that came over and sat with him while she helped out at Church or needed to run errands. I remember her bringing him to a Church dinner in a wheelchair. It had supports for his head and I remember an oxygen tube. He did not live long with the desease. Average is 2-5 years maybe a little longer.

This is a horrible desease with no cure.

Look up F.O.G. -- Fear, Obligation and Guilt. That's what she is doing and it's dirty pool.

Illness doesn't change who we are, and it isn't changing your Mom from who she was and who she is.
You need to sit with your Mom and gently explain to her that you cannot continue in care of her without the changes you need, and that she will end up needing 24/7 care and LTC placement without these changes sooner than later. That no one can predict with 100% certainty the way her illness will progress, but that CURRENTLY you need these changes to continue in her care. You should also be certain the POA is done and that you are in charge with a good document to do what you will need to do. Your mother's denial and religiosity is very unlikely to change. You are going to have to be able to act. If you are not, you should bow out and let the State step in for her care. They will act honestly without regard to any drama your mother visits upon them.
A 90 year old having to do caregiving is pretty much out of the question, but unless someone here has dementia, and you are designated POA, you have really no power to act whatsoever. I am so sorry your Mom is facing down this dreadful illness. Please don't take on more than you can do. It will change nothing, but it WILL risk your own health which should not be up for grabs on some sacrificial altar. I wish you the best.