Hi everyone, this is my first post, I hope I'll be able to contribute here, but I'll start with looking for help.
So my mother has lumbar onset ALS, pretty advanced now, she's basically complete dependent on other people. Those people are me, and her 90 yo mother.
My mom also has depression and few other health issues, but the ALS is obviously the most impactful. She, however (and understandably) doesn't want to die, to the point of not wanting to make any changes to the house, like some small remodeling, getting a nice electric bed, or anything like that. She believes that getting such items is "succumbing to the illness" and as she's heavily religious, she considers that to be proof of not believing in the miracle that obviously will happen any day now (sorry for cynicism).
The problem is that the current arrangement isn't the friendliest to my back, and basically no outside help will agree to replace me (at home) - I'm a large and strong guy and I sometimes struggle.
Whenever I bring out this topic I get a temper tantrum, and I usually hear that I don't really care for her, I just want her to day, or in better days, that I don't believe that she'll be healed hard enough (which is another topic anyway).
She always was somewhat "emotionally abusive", I realized that not long before the illness, that she was basically blackmailing me with her love/hate throughout my life. I've dealt with that a bit, but the mechanisms are still there and it's not easy to deal with them everyday.
I wonder if anyone here is/was in similar situation, and what are your suggestions? I'd appreciate any help or even a nice word (I'll just happily commiserate too), as I'm at my wit's end.
As far as her spiritual belief that having "enough faith" is the only precursor to divine healing: ask her why Paul the Apostle was allowed to suffer with the "thorn in his side" (from some sort of illness or disease) all the while he was evangelizing and discipling? And not to mention all the physical persecutions he endured (like whippings, etc.)? Is she saying even he didn't have enough faith? If so then there's no hope for the rest of us believers.
2 Cor 12:7-10 (Paul writing to the church in Corinth)
"Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh... Three times I pleaded with the Lord to take it away from me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
I hope this helps. Welcome to the forum!
And what if you sustain an injury and can no longer assist?
As a religiously devoted person, I think your mother should be showing more regard for the 'living angel' tending her needs while awaiting her anticipated miracle.
Stand firm for the tools you require.
What does your grandmother do for her?
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.
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.
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.
So many good posts
I also agree you should have POAs for both your mother and GM that include financial and health car.; setting boundaries to protect your physical and mental health; getting in other aids to assist you for your mother and GM.
Best wishes to you and your family as you all journey down this world.
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.
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.
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!
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.
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...
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.
I know this is a difficult situation.
Best wishes.
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.
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.,
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.
And I'm sorry about your husband, I really can imagine how hard it has to be to see a chance disappear. :(
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.
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
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.
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!