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I'm alone caring for my 73-year-old mom with moderate/severe dementia. I live too far out to get a doctor to make a house call. My mom in the last couple of days has said her back hurts, and will only get up to go to the bathroom. I try to tell her that we need to go to the emergency, but she won't get up, and says no. She hardly drinks water in the last 2 days and doesn't want to eat. She has dementia with severe hallucinations 24/7, she isn't on any medication for the hallucinations because these types of medicines make her sick and the neurologist said he doesn't want to put her on anything. I'm going the natural route anyway, but the neurologist pretty much abandoned us, and says there is nothing he can do. He even looked angry when my mom yelled at him and told him to leave her alone (I thought neurologist are use to brain damaged patients...). Anyway, she has no primary physician because she refuses to see one. It's hard to get her to understand me because she is now in her own reality. The hallucinations/delusions are difficult. I need to bathe her etc. but with her back and her refusing any of my help, I don't know what to do. Should I call 911, will they take her to the hospital even if she becomes combative and refuses help. She swears at people and can be quite aggressive. I don't want there to be something really wrong and with her not eating for 2 days... I have given her Dr. Axe Healing Protein and Green Food Super Drink, but just doing that she fights me. Any advice would be so much appreciated. My financial situation is dismal, I have durable POA and Medical POA. She has no long-term care, I provide all her care at home, she only has blue-cross/blue-shield insurance. I haven't applied for medicare/medicaid yet. Don't know if I should. Her monthly income is only 2000 from my deceased dad's government pension, it mostly goes towards the mortgage. We live off of the life insurance money, but it's quickly being depleted. I work from home to try to bring in extra money.

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((((((((hugs)))))) you poor soul - jenny too.

I was fortunate in that when my mother was having hallucinations and getting worse we already had a geriatric psychiatrist involved, I was getting desperate so the geri psych made the call that mother would be taken to a geri psych hospital whether she wanted to go or not and sedated if necessary. Fortunately mother decided to go voluntarily and spent almost a year there being assessed and finally agreeing to be medicated. It was a struggle but not my struggle any more. I was never a hands on caregiver. Mother was in an ALF when she became paranoid etc.

My experience was that when the right professionals became involved, the right things happened. The geri psych was recommended by a geriatrician, when mother was once in hospital, and was part of a community team and she (the geri psych) made house calls with a mental heath nurse. I am in Canada and very thankful for this program.

I hope the nurse can start the process of getting the help your mother so desperately needs.

Keep us updated. This is such a difficult time. Mother is now medicated and in an ALF suited for people with mental health problems (personality disorder as well as vascular dementia) and more content than she ever has been.
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Thanks, I've been on the phone trying to get information. I contacted a place that has a nurse practitioner that will come out Monday, I hope this will help her. They said that they would try to get her hallucinations/delusions under control, maybe that would help her to be able to eat (she won't think something is in the food etc.). They said they may not need the doctor's referral once the nurse accesses her. But I did contact her doctor that she went to a long time ago for a referral, and they said they will see what they can do... I'm still trying every 15 minutes to get her to eat/drink but she refuses every time, anytime my mom refuses ice cream I know she is sick, ice cream is her favorite dessert. The department of aging was not in, so I will call back.

All I can do is keep trying...
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I feel bad for you too. The other thing is to see if social services or the department on aging could help in any way. I understand how helpless you feel.
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This is horrible Jenny, no caregiver should be going through this... I would love if a doctor could come out, but I haven't had any luck. Let me know how your fair, okay?
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I am going through this exact same thing. I called the paramedics too and they said the same thing! So here we are, on day 4 of not eating and being convinced we are all trying to poison her!There are doctors that will come to the house. Maybe they will be able to help you. That is what I am going to try next.
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I just called the nurse hotline, I can call them back and see if they have any Urgent Care Clinics. I will do that today. I just now called the neurologist, the receptionist took my info. said he or her would call me back...

She always had a primary doctor, then she went to a new primary doctor after my dad passed away, because we moved and it was too far to go to the previous one. The new doctor said she could no longer see us because my mom's dementia was too advance for her, she recommended a geriatric doctor. I made the appointment and did manage to get her dressed, but when it came time to get into the car to go, she refused and went into the house. I tried a couple more times, but it was a no go. She won't go out of the house.

Yes, you are right, she needs a primary doctor to get things moving...
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When you say she hasn't got a PCP because she won't see one, I thought you meant there had been one originally but she'd got rid of him. What, never had one at all, ever?

That doesn't stop you calling one. Do you have your own? It's just it would be somewhere to start - almost anyone who might help is going to need some medic putting a signature to it. And the neurologist, apart from being quite snotty-sounding and not someone either of you really took to, is a bit too specialised for the sort of general review that you're after.

The insurance company couldn't even offer an approved list of urgent care clinics or anything?
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When I said I'm going the "natural route", I meant with no anti-psychotic drugs, she is allergic to them and the neurologist will not prescribe her any. My parents always had a primary care doctor all their lives.

The neurologist made the diagnosis a year ago. Before my dad passed away, my dad and I took care of her for about 10 years, in the early years, she only had slight forgetfulness, but she stopped cooking for herself and driving years ago. So my dad and I took over that aspect, but she still could talk, bathe, make decisions, talk to friends etc. My mom was on extensive medications known to cause dementia almost all her life, statins -- celebrex, lipitor etc. Then she started getting really bad in 2015. My dad passed away in late 2015, and ever since then it has gotten extremely worse, I'm her only caregiver. I really want to give her the best quality of life. It's going on 2 years as a full-time caregiver, but if you add it all up, I've been taking care of her for about 13 years (with my dad's assistance).

But, the neurologist is a cold, uncaring doctor, he literally has done nothing, no advice or solutions. I understand why he doesn't want to put her on medications, but still, offer some type of alternatives. Now with my mom's refusal to go to any doctor, the hallucinations and delusions, it really has turned upside down. I don't know how to get her evaluated, even for a nurse to come out once a month to look at her requires a doctor's approval.

This is my second time calling Paramedics, the first time she fainted and had low blood pressure/shallow breathing when the same neurologist prescribed Seroquel. She went to the emergency for that incident. I called her Blue Cross insurance, 24-hour nurse hotline last night, they also advised me to call 911. That is the result of today, the EMT had me sign a refusal to go form. They just said there was not much they could do.

I never wanted to take her out of mainstream medicine. I always took her to her doctor's visits, if she complains about hurting, I called her doctor. This is before she started refusing. She always had her yearly exams, blood tests etc. But now she fights me so much, even trying to keep her hydrated is a battle. I just don't want her to suffer, she has been a good person, a good mother to me, and it's just not right that the medical industry doesn't help caregivers, it makes no sense to me. She's my mom I just want to take good care of her.

Thank you for all your advice and help, I just don't know how to proceed...I called her insurance, called paramedics, called a nurse facility (they need a doctor's approval). I will try to call her neurologist and see what he says...
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Nicene, who made the dementia diagnosis? And, how long have you been your mother's primary caregiver?

I'm just trying to get a handle on how much trouble you could be in if you don't force the issue - ranging from none at all if there is no formal diagnosis and you haven't been involved for all that long, to ohmygod if you took your mother out of mainstream medicine against medical advice, or enabled her to do that. If that sounds callous, as if I'm unconcerned about your mother, I would be very concerned about her: but with the DNR and her evidently long-standing rejection of healthcare professionals your mother has made her own views consistently clear. So it wouldn't be ethically wrong to respect her pre-existing wishes; but you really do need to cover your own backside.

if it were me, I think I'd call the fired PCP and eat some humble pie. Worth it to get professional advice, maybe.
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I called today, the Paramedics came out, they said there was nothing they could do, she was fighting them to go to the hospital and they didn't want to physically force her onto the stretcher. They said all they could do was force her with feeding tubes once she got to the hospital, she has a DNR...I don't know what to do. No one has helped me with my mom at all... :(
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it is a hard phone call to make, but do it.
the hospital social workers will help you
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In your shoes, I would call 911 and let the EMTs evaluate. Mom may have a kidney infection (back pain is one of the symptoms and they, along with UTIs can cause psychiatric symptoms in elderly people. Listen to what the EMTs tell you.

They can be VERY persuasive at getting elderly ladies to go to the hospital.

Once she is at the hospital, you have access to the social work department. It's a win-win scenario in my book.

If that doesn't work, please post back and we'll figure something else out. But be sure to let us know....we care!
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