It is time for my mom to transition to care outside the home. I wrote about this almost a year ago and I have circled back again. My mom is now begging me to get her out of the house with my dad. He can no longer care for her safely. He loses his temper quicker now and is completely worn out. He is verbally abusive and I am suspecting physical at times.
My mom's cognitive abilities have declined dramatically over the past few months. She can't remember who I am at times. She calls me mom or her sister. She has been hallucinating and not sleeping. She has also started to have episodes of rage where she will scream at everyone to get away from her and then start crying. She won't listen if you try and calm her down. When it is over she has not recollection of it, but we do and it is very traumatic.
She is literally not able to do anything on her own and needs constant supervision or she will end up hurting herself. I am starting to think she has more than PD, but either way we can't manage to care for her anymore. Her daytime care giver is worn out as well and I can tell she is losing her patience.
It makes me so sad. NONE of this is my mother's fault. It is the horrible disease that has taken her away from us and transformed her into someone else. She can't control any of it. I don't blame her at all. I love her and want to help as much as I can, but the reality is that I am suffering with anxiety and depression from the constant stress. I know my dad is to and he turns to alcohol and gambling to cope....which only makes it worse.
All that being said...I am determined to get her out of that house. I just don't have any idea how we can afford it and what the best option is for her. She needs 24 hour assistance. She gets up several times at night and needs her C/L a couple times in the middle of the night as well. When I am caring for her, I am constantly observing her to see what she needs. Maybe I baby her, but I just can't stand to see her suffer.
Is there anyplace that exists that understands how to care for such advanced PD?
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TSonmez
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In the interim, B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Thank you. She is on the B1 therapy...for a little over a year now. She was diagnosed in 2013 and progressed rapidly. I do think the B1 has helped some but I also don’t think she has typical PD. Something else is going on.
I am so sorry to hear of your mom's situation, the family's. I am sure your dad feels guilt for his lack of patience, but common for caretakers taking care of one as you describe your mom.
I read your post of last year and the responses were full of good information and suggestions. Have you checked with the Veterans agency? Does your mom have LONG TERM CARE INSURANCE? If not, without help it will cost quite a bit monthly. The United States has little help with terminal long term illness that invites placement in a "Home".
My son was DX with Parkinson's for three years, but after three years it was changed to PSP (Progressive Supra Nuclear Palsy). Social Security considers that a terminal illness and if one is eligible for Social Security benefits, qualifies.
It does sound like your mom is due for a second evaluation from a Neuro. It takes a good three years for symptoms to appear that leads to a different DX of a brain disease, other than the original/standard of Parkinson's.
I have tried a couple times with the VA but she was denied due to income and not being able to prove she was exposed to agent orange.
My parents do not have long term care insurance.
I have read that there is some way to use life insurance or convert it. I am going to research that more.
I am reading up on PSP and my mom shows some of the symptoms. She can't keep her eyes open and she does complain of them burning sometimes. Her gait is really bad and she has to go everywhere with a walker. She falls back whenever she tries to stand on her own.
Maybe I should look up a Dr in her area that handles PSP and have her evaluated.
Hi, I am not implying that your mom has PSP, I am sorry if I gave that impression, but I am stating that I think there is a strong possibility that your mom has something other than idiopathic Parkinson's.
I would suggest that your mom go through her health insurance plan for another opinion. If your mom has NO health insurance then I would suggest that you go to the closest university that offers neurological evaluations....if you can afford it. This I will say, from my perception, the situation you describe is very unhealthy for all involved...your mom, your dad, you, etc. ARE YOU PAYING FOR HER DAYTIME CARER?
Here in California, I live near the VA hospital in the San Fernando Valley, the VA does give in-facility care to PSP, etc, patients. The challenge with all bureaucracies is starting the process.
What state and city do you reside?
Are you within a 2 hour drive to a research university? If so, I would start making some phone calls to get info on costs and procedures for an evaluation. It usually takes 6 weeks to get an appt, AFTER getting the correct information.
I think she definitely has something more than PD. It just progressed so rapidly and she does not have a resting tremor. She does respond to Levadopa...but it barely last two hours and as time goes on works less and less and only causes uncontrollable movements.
She has been to a few different neurologists. They all do the same basic exam. I took her for a DAT scan about 5 years ago and they used that to confirm a PD diagnosis. My dad is retired military so she has Tricare and also Medicare since she is 70. I could take her to another neurologist pretty easily.
Tampa is only about 2 hours by car on I-75 to Gainesville. The Univ of Florida is located there and I believe it is a research facility. Why not give them a call and see what procedure you would have to follow to get your mom in for an appt. I 'm sure they would want a copy of her MRI and DATSCAN, plus a copy of her medical records pertinent to her brain disease and appointment. All it takes is patience and willingness to sit thro the phone calls.
I wrote you a response and then accidentally deleted it.
You are about a 2 hour car ride from Tampa to Gainesville. I believe the Univ of Florida is a research university and perhaps you can make an out of pocket appointment. Call, tell what you need, and find out if you can, the approx cost, and what medical documents they would like you to send or bring.
Before you worry about placing her in a home, find out about getting help for what sounds like psychosis. My husband was totally out of his mind,hallucinating and screaming. Proper medication (Remeron, Quietipine and lorazapam have stopped the psychosis(he never remembered any of it)and he is so much easier to get along with.We have a life together again. It can still be difficult at times, but it is so much better. He doesn't need to be in a home and I sure thought he would have to be. It took less than a week to start seeing results.
This is more than PD, it is some sort of psychosis that may be underlain by a progressive dementia and more complex than a neurologist alone can tackle or even see to steer a course through the necessary MULTI-disciplinary specialties following assessment by a good internist, again one who has some experience with elders, dementia and PD.
She is about 3-4 hours by car from Mayo Clinic in Jacksonville FL, best in the world, let me repeat, best in the world, at fast comprehensive multispecialty workups in neurology, internal medicine, psychology, psychiatry, and THEY WORK TOGETHER AS A COMPREHENSIVE TEAM THAT ACTUALLY TALK TO EACH OTHER OFF CAMERA ABOUT THE SITUATION AND PROSPECTS and what they each can do and where it all should lead, then they read each other's notes electronically as they go along and take into account the collective work. Once you are in their system they work quickly to get the different specialties involved and then cross consulting, because they are set up to take people who come from very great distances that therefore need a system with capacity to get the patient seen in the various different departments without having to make too many trips from home. Virtually no one better in the world at this and they attract clientele from across the globe. What happens is you consult with them and get an appointment quickly, and also maybe with a local psychiatric practitioner that knows something about elder care and diseases for the short term management. With Mayo you typically need to do a couple different trips or one longer one where you stay at a local motel/hotel while they work her into the different specialties at their availability.
In the meantime, she sounds like she is in a somewhat emergent situation, because of the short term distress and symptom intensity...so I would immediately look for someone locally who can do a short term response and perhaps see whether some sort of psychiatric medication can be appropriate to explore to take the greatest edge off...especially one who has some understanding of having been exposed to agent orange. which includes multiple systems insults, whether the VA wants to admit it or not.
Mayo also specializes in clustering appointments in the same week or short time frames for people who have to travel long distances to get to them, because they serve a world-wide clientele...all you have to do is request of them that you have to make a trip and that there are several departments potentially involved and will need to try to cluster visits that can only be known once the initial assessments start. You may likely need to prepare for a few nights in a local motel/hotel, and there will be quite an industry around the clinic for that sort of thing, temporary stays, regular hotels, maybe even a charity hostel or two if you ask them if they know of any.
Mayo also has access to, maybe even provides, post assessment counseling and guidance as to what sort of placement is needed and to get started constructing one or maybe a referral to local people who offer that sort of thing. Also get on the phone to your local state or metro department of human services or health and social services for referrals to locals in that industry. With more immediate symptom control with a gentle psychiatric medication though, might allow more time to be comprehensive, meaning maybe in-home is still possible with a local agency that coordinates home care and support, respite and nursing and homemaking services, there's a whole industry of that out there. It's a start at least.
Then you get on the phone to your congressman and both senators and start screaming about the VA screwing you, and keep on screaming as well as pleading for intervention on your behalf with your local VA. While you are on the phone with the politicians, politely inquire whether they know of any local media outlets that like to work up human interest stories about elders and geriatric cases being harmed by an insensitive system, especially in a state which has just about the highest proportion of elderly/geriatric voters in the country, that swallow and chew up whole families, including the military service and agent orange angle. They will get the hint.
Absolutely the best advice and most thorough description of the absolute best medical resources that I’ve read anywhere! Marion, thank you for proving TSonmez with this vital information. I’m sure that it will also help other American families going forward.
It does appear that the VA is the only option for residential long term care that if approved will not take a huge bite out of the couple’s finances.
First, please obtain referrals for an elder care attorney. Financial decisions will need to be made and the family should explore legal ways to preserve assets.
As far as assisted living is concerned, even with an optimal medication regime and close monitoring, from what TSonmez describes, her mother’s care needs most likely are too great for most assisted living communities, unless the nighttime agitation is addressed successfully. Assisted living, moreover, is private pay with uncommon exceptions.Nursing home placement may be necessary, paid for by the couple’s assets with their home excluded from the calculation until the mother qualifies for Medicaid and is in a facility that accepts it.. The father gets to keep some assets and remain in the home. When the home is sold, the state can recover their cost from the proceeds.
The good news is that the Mayo team very likely includes skilled social workers who can guide the family towards optimal placement if necessary . Nursing homes vary tremendously in quality but the most important way to ensure good care is to have family visit often and at varying times.
The father needs to be relieved of his role as primary caregiver. He is not coping well and the situation is not safe.
I called Mayo Clinic yesterday to request an appointment. I wasn't really sure what to ask for so I asked for Neurology. I wasn't able to make the appointment because I needed her insurance info, so I will get that when I see her tomorrow.
But I am wondering...should I make her appointment with neurology or should it be with a different specialist? I guess I am asking where should I start so she gets a comprehensive evaluation and the right team.
My preference would be to start with internal medicine rather than select for a particular specialty and not other specialties...a sort of "first things first."
"Internists" deal with the whole body of organs and systems as they interact and integrate their particular functions with each other, check out your total health, conditions and treatments, and interview you for your experiences, complaints and symptoms with your mother's current problems, and then make the specialist referrals from there.
An actual example: someone with a third heart beat and cardiomyopathy was having as a result insufficient perfusion of blood to her brain, causing arousal and neurological symptoms as part of the insufficiency. But the original complaint system was being drowsy all day. It took a cardiologist, as recommended by an internist, to catch the connection, which until then was being treated locally and inadequately, for years, by giving her stimulants. A change in her blood pressure meds erased years of unsuccessful and self-defeating treatment directed toward neurology. You could hardly expect a neurologist to be able to see what only a cardiologist would be able to know about...so to keep potential carts from getting before the horses, I always recommend starting with internal medicine, and then discuss with them the referral implications. Real example.
So that is why internal medicine is my personal "front door," a "comprehensive" start. Just a personal bias. But I think it actually can be important because, as you can see, sometimes there can be things going on that masquerade and might run the risk of fooling a separate specialty who is primarily devoted to this set of things and that set of things, therefore the best overall thing is to start with the overall medicine which is the specialty of "Internal Medicine," since the brain and neurological system are included as among the "organs" and systems they cover as a whole. This also puts them in the position of being able to appraise, and if necessary correct, the kind of healthcare you have been getting up to now. The term I am using here to convey what they do is "rule outs."
They are also specialists in knowing about the vast array of different disciplines around the clinic, that you can't possibly be expected to know about, and medicines and diets that can interact and conflict within human systems. They really do the best at taking into account your whole history as part of their initial examination process, and then it is automatically made available to the others in the electronic records (which you should always remind everyone you see to read) so they don't all have to worry about tackling issues that might actually be a mask outside of their specialty...the internal medicine guru is sort of the best stand in for a "team leader."They also are not bound by time constraints (none of them at Mayo is). They will see you for as long a session as it takes. They are on salary, no one is pressuring them to see 10 patients an hour like say the Catholic/Mercy care systems and so many others have gone to as the healthcare marketplace has changed over to during the last 50 years, hard core corportation profits-only money makers even when "not for profit."
But again, that is just a personal preference based on my own training experience... I was raised as a professional to operate under the "if you don't have time to do it right the first time, when will you do it over?" philosophy, which can sometimes create a bias. Maybe when you see the neurologist, you just remember to inquire about what collaborative referrals may be needed to other disciplines, including psychiatry. Both neurology and psychiatry should have ample access to psychologists as well, who will be needed for some of the neuropsychological and psychiatric testing that only they can do.
Would love to hear back from time to time on how it is all going.
Sorry, I did a slight revision/clarification/addition above, so hopefully you can circle back for that. I think this last part of the comments should pretty much do it. Best of luck!
Hi - I am so sorry to hear about your mom. I think she needs a facility with a memory care center. If this is in a nursing home and she has less than $2000 Medicaid will pay for it in the US. Some homes won't take Medicaid and others limit the number of Medicaid patients they will take. So this will require some research. I don't recall the details but since she is married there is a provision for your dad keeping his home under Medicaid. Medicaid will not pay for assisted living, but it sounds like she is beyond that level of support. If you find a facility you like, they should be able to send someone to her home to evaluate the level of care she needs. She cannot give away the money she has to get below $2000, as they can look back 5 or 10 years.
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