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My husband is 66 and suffers from Parkinsonism. It's not Parkinson's disease, but much like it. Over this past summer, his mobility has become much worse and he complains of complete numbness in his right leg. I suspect Lumbar Stenosis, but after visiting 5 neurologists and having a hip replacement, no definite diagnosis was ever made. I am responsible for all his care other than feeding him. Recently, he has become unable to control his bowels and I suspect he doesn't even realize when he has a movement. This happens at all different times of day, so there is no "schedule" to follow for him. When I get him ready for bed, I find he has had a movement in his diaper and could have been sitting in it all day. I plan to set up a toilet. Hair in his room, but if he is not aware of having a movement, this won't do much good. I am trying to get him to go to a neurologist. Perhaps an orthopedist one more time. He has an "ignore it and it will go away" attitude, but I know this won't. I am cancelling our vacation next week because I can't handle these clean-ups far away from home. He insists I don't cancel it, but I feel I must. How can I convince him that for MY own sanity at least, we need to see a specialist even if he or she tells us there's nothing to be done? TIA for any help.

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Just because the telephone rings does not mean you have to answer it, especially when you don't recognize the phone number. That's why voicemail was invented.

Personally, I find it very stressful to even think about taking a vacation right now given the situation with my inlaws. Perhaps you need to catch a convenient 24-hour flu or "bug" warranting cancellation of the trip? Or you need some of your own medical tests done? It's unfortunate when "white lies" become necessary to protect ourselves from our loved ones when their judgment has become impaired.
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I would like to thank all of you for your good, and very frank advice. Yes, I have been an Ostrich with my head in the sand. Hubby is refusing to cancel our trip, but I know it my heart it will be disasterous. It's never easy to accept that someone who has been "in charge" for over 40 years of your life is suffering from a progressive and debilitating disease, and that life is about to change drastically for both of us. Having recently dealt with my mother, who also was always controlling, and now doesn't even recognize me, doesn't make having to go through this again any easier. I am slowly beginning to accept that I need help handling this despite hubby's protestations. After years of caring for a man who never followed his advice, our PCP has pretty much washed his hands of my husband, so once again I need to address the issue of finding a new doctor; perhaps a geriatrician. I also need to speak with someone, perhaps an elder care attorney, for advice on just what my situation would be if my husband does go into skilled care. A Place For Mom sounds good, but I've heard that once they get your number, they're relentless. I also need to speak with our property management to see if our home CAN be rented. Whatever solutions I find, it won't be easy..
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I'm not one to lightly say "put them in a care center." I cared for my own husband at home during the 10 years of his dementia journey.

BUT

There are cases where a care center is the best solution for everyone. It sounds like that might apply to you. Continue to pursue a better diagnosis and treatment plan. If he improved enough with a new treatment plan you could always bring him home.

You stay in your home, taking care of your grandkids and enjoying your pets. Hubby is in an appropriate care setting, where you visit him often.

Before you say you can't afford this, please, please, see an elder law attorney about applying for Medicaid.
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There are different kinds of dementia. So, keep things in perspective - being in diapers and not realizing you've had a BM and not being able to clean yourself up (as well as depending on someone else to do so much care) and thinking sure, just go ahead on vacation and don't get assessed and treated for this - well, it does not add up. Parkinsonism that is not Parkinson's disease would be associated with vascular or Lewy Body dementia, and in those types, the judgement and empathy/perspective taking is more impaired than recognizing people and conversing, and short-term memory is variable but long-term is better preserved. Normal-pressure hydrocephalus is possible too if the incontinence is not spinal in origin. You don;t mention medications, and side effects can also contribute to these kinds of problems. You may need a neurosurgeon instead of or in addition to a neurologist, and if you get a neurologist make sure they are geriatric-oriented and do at least a mini-mental status exam; a good one will treat him respectfully while doing that kind of cognitive assessment. But, he is in alarmingly bad shape for his age and the hip replacement would have been the least of his troubles. Even the tremor and dyskinesias of Parkinsonism would not typically make someone so totally dependent unless it was very advanced or not responding to treatment for some reason. Getting diagnosis and treatment for such a serious condition is not the least bit childish or crazy - it would be the responsible, normal, adult thing to do. Not doing it goes beyond "stubborn" though the fearful denial part is understandable...maybe a manly, matter of fact "there is something wrong and we have got to see if it can be fixed" approach would work, and the firmness suggested would be necessary.

When you go in for evaluation, ask that you get some time to talk with a social worker who can give you or you and your husband more ideas of what your options really are and what the downsides really are.There may be waivers you can get where you can get more support to stay at home, for example.
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My MIL has a neurodegenerative illness and they often are not simple to diagnose because tests only rule things out, not in. It's not like diagnosing something like diabetes, for example, where there's a blood test and results are positive or negative. Furthermore, many Parkinsonism illnesses can only really be diagnosed post mortem when the brain is autopsied. To this day my MIL does not have a definitive diagnosis because it's not yet possible.

That said, my MIL has both urinary and fecal incontinence and she says that she doesn't even know that she's had an accident.

You should cancel your vacation as you will not want to be far from familiar surroundings under the circumstances. There came a point where I refused to travel with my MIL anymore because of the explosive incontinence. Did you buy travel insurance just in case?

Cauda equina is the long group of nerve roots under the waist where the spinal cord branches out. It resembles a horse's tail, hence its name. Has your husband ever herniated a disk? What profession did your husband have? Is your husband overweight? All those things plus genetics could cause herniated disks and/or cauda equina. But whereas cauda equina is rare, herniated disks are common.

As for talking to your husband, your prior thread is concerning. Whatever the cause of his behavior, you will need to make unpopular decisions for him. Be kind yet firm and stay on message. When you begin to feel like a broken record, you've got the hang of it. When you disagree with what he says or wants, matter of factly say "I couldn't possibly do that" or "That's not on my list of things I need to get done today." My MIL tried to manipulate me something fierce but I just stayed on message. Stay strong and levelheaded because your caregiving arrangement has to work for both of you, not just for him.
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Huge mom just because your husband had his own business and was used to calling the shots does not mean he is still competent or able to make his own healthcare decisions. I would start by seeing a gastologist to address the bowel incontinence which i presume is fairly new as you previously mention urinary incontinence for many year. He also needs to see a urologist because his urinary incontinence may be due to prostate problems. There is a certain comfort in sitting in a soiled diaper for peope when they are seriously ill, it is kind of a return to the comfort of childhood.
Find another neurologist and insist on a diagnosis don't make guesses at things like spinal stenosis that can easily be ruled out. More possible are things like MS or ALS which are not so easy to diagnosis. you really have two choices. you can either let things progress as they are doing or find out what is really wrong. My guess is the end result will be the same and he needs institutional care.
I believe you also previously said that you are also disabled so can not work but do babysit your grandchildren this is not a healthy environment for them to be for two reasons. They should not be around your husband with this issues and they may get into dangerous trouble when you are tending to your husband's needs.
You have taken a step in the right direction by obtaining a waterproof chair which will meet some of his needs. Can you remove the carpet in the areas he frequents and lay sheets of linoium to protect the floor. Rip out the carpet and treat the floor with plenty of bleach water and allow to dry fully.
Why exactly do you need to sell the house, can you really not afford to continue living there. medicaid will not take everything, you will be allowed to keep your home and personal belongings, plus one car and I believe $10000.00 assuming you have that much. Another option would be to rent out your house and find something smaller for yourself. I would hate to see you have to give up your pets, you are going to need all the comfort yu can get in the coming months. Another optionwould be once hubby is settled somewhere would be to take in room mates. There are lots of older people who can not find rentals where they can take their pets and you are already pet friendly. Try and think outside the box and get things moving as this is only going to get worse as it already has and very fast. Call your Dr in the morning and get things moving.
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I don't have any good suggestions on getting him to see an orthopaedist, but do want to mention a concern since you think there may be some lumbar issues. Research cauda equine.

Orthopaedists have always asked me when I've had spinal treatment if there are any radiating issues into the arms and legs. When I began PT for lower back pain, I did some research and discovered an emergency condition called cauda equina.

I'm not qualified to make a connection in your husband's case - I'm not a medical person, but the combination of loss of bowel control and right leg numbness raises some big red flags.

I would concur that he does need to see an orthopaedist, but I honestly don't know how other than by ambulance or some type of ambulette service.
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I certainly believe that he needs a diagnosis. There is no way to determine what is wrong without that, but it reminds me of a situation that I encountered with my cousin. She voluntarily would wear diapers and lay in bed with soiled diapers when she was able to get up. There was a bedside toilet by her bed, that she refused to use. We were perplexed as to why she did this. Eventually, she got up and resumed using the toilet. About a year later, she had significant dementia.
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I'm still puzzled as to his diagnosis, many men in their late 60's andinto their 70's are putting in a full work week. The parkinsonism is a consequence of what, exactly? A neurodegenerative disorder? brain lesions? head trauma? metabolic disorders? LBD? The fact he was willing to sleep and sit in a urine soaked bed and chair really makes me question his mental health, that is more than laziness and denial imo. Looking to an orthopedist for answers if the root cause is neurologic is a waste of time, but I would definitely keep pushing for a definitive diagnosis so you can have an understanding of how his disease may progress and be able to make realistic future plans.
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As Cwillie pointed out in his post, it sounds like there are multiple and significant problems going on and that your husband is not able to process or even understand his behavior is harmful and damaging. He posted your prior question and I am posting it again.

I might consider that your husband is not able to process how serious the situation is. Perhaps you are expecting him to communicate and respond in ways that he is incapable of doing. I think I might move towards taking over the decisions for his health care and welfare, if you have the authority. This is assuming that he is incompetent, which it sounds like that might be the case. If you do believe he is competent, then I might just report his situation to his doctor and then make sure your safety, health and welfare are protected. Living in the conditions you describe sound like that is quite challenging for you.

This the link I am referring to.

https://www.agingcare.com/questions/husband-destroying-house-209118.htm
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Cwillie, there is more at play here than simply forcing my husband to go into a nursing home. Of course that is a consideration for the (possibly near) future. However, I believe I have stated that finances are a huge concern. We live in a neighborhood where houses are for sale for months and in a few cases, years. We also have beloved pets to consider. Rehoming or euthanasia is a heartbreaking alternative. Hubby shows no signs of any "mental illness" other than typical male stubbornness and denial. My mom has dementia so I am familiar with this. The advice I need, I guess, is how to approach hubby without sounding like I am addressing a 2 year old, or sounding like I am angry with him. It may well come to the point where I have to just make an appointment with a neurologist, have his tests redone and ask for a frank and honest diagnosis and prognosis. It won't be easy, because my husband is not and has never been reasonable. As a former business owner, he is used to making his own decisions and having them carried out. I need advice on how to approach him without making him feel like a child or like he IS mentally ill, neither of which is the case.
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Orthopedists won't address Parkinsons. He needs a good Neurologist. Avoid airline travel entirely, it can be a real nightmare.
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He should see another specialist. According to a website on Parkinson's exact opposite happens, the bowel is slow to move or doesn't causing constipation, since the area of the brain that regulates when to have a movement is damaged. He may have something else causing loss of bowel function.
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I looked at your profile and thought it might be helpful if readers saw your other thread:
www.agingcare.com/questions/husband-destroying-house-209118.htm

Did you truly mean hubbie is only 66? What have all these specialists given as a diagnosis and prognosis? It seems to me there is a whole lot of mental illness going on here aside from his physical limitations, whether it is caused by dementia or something else his thinking is not rational. Either he is competent and can make his own medical choices, or he is not and you take over. Either way you are not obligated to destroy your own physical and mental health catering to him, you said in your other thread he needs skilled nursing, when does he cross that line?
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