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I'm old, overwhelmed, tired, angry, filled with grief.


My husband of 51 years has PD--diagnosed July 2020. The PD and the drugs are confusing him. He has daily hallucinations. Periodically, his eyes sparkle. He sounds like himself. I see the old him. I think I can let him have autonomy. Twenty minutes later, he's seeing people, thinking slowly, eyes dead, can't speak or walk, he falls. We are living with family, having sold our house to seek medical care in another state. Now the market at home has escalated to the point I can't find anything suitable we can afford. It's hard taking care of him here, though our family is just wonderful. All the other things that go with moving are also a problem--insurances, car stuff--the normal things a person has. Insurance has been a problem--all docs out of network. Big bills wracked up before I realized it. Changing insurances. The anxiety of how I will pay for it all.


To top it off, I have problems too. I came from an abusive family and have C-PTSD--unresolved, therefore, I have a load of my own to carry. The triggers that present themselves from the people he sees, and the fact that he doesn't know me sometimes or thinks I'm some other woman, are just horrible. We have had a long, happy marriage. I don't want his last memories of me to be the angry shrew I feel like I am becoming.


--Essie

Essie, you are, I assume, given the length of your marriage, at least in your 7th decade. I think it is too much to expect yourself to do hands on 24/7 care of someone you are losing, someone who is slipping away. Unfortunately, many drugs that help with hallucination in these cases make the mobility worse, and some that help mobility make hallucinations worse.
You have now added to the mix huge life change, selling your home and moving to another area.
As to the change in supplemental insurance you will need, and etc. yes, it all has to be done, but done not on one day, done a day at a time. Have you assigned POA to any family member willing to help you with transportation and so on? Do you have assets in cash from the sale of your home or was there no profit in the sale? Are there assets you can access in terms of insurance policies with cash value and etc?
The truth is your husband needs placement, or will very soon. That will mean division of assets so as to protect your own assets in the marriage for your own care ongoing. But you cannot conceivably continue to do it all without help. There will have to be an elder law attorney--while there be certain you assign POA for yourself in case of it being needed by family. Are you POA for husband? If not you will need physician's statement to file in court to be conservator for him.
There is a lot on your place. Try to make diaries, lists and keep track of things done and things remaining to do. I am certain the burden of this is heavy and I am certain you do not know where to begin. So it is to begin. I guess finding out how to get supplemental coverage for the area you are living in now.
Keep careful records of day you became a resident in your own state, day you did this and that. Keep file folders, one for each subject you discussed and the many more coming.
I am so sorry. I cannot imagine how overwhelmed you must feel. My heart goes out to you. I hope you will keep us updated as you move slow step by step.
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caroli1 Feb 4, 2021
Alva, I am pretty sure the O.P has a Medicare Advantage plan, not Medicare + Supplement. Medicare + Supplement normally has no network. That's one of the reasons people choose them even though they are often more expensive than Medicare Advantage. Medicare Advantage plans DO have networks. I changed from Medicare + Supplement to a Medicare Advantage plan a few years ago. Before changing, I checked to be sure my doctors were within network. I not, I can still see an out-of-network doctor, but at a higher cost. That I can see one at all is because I'm in a PPO and do not need a referral. Being in a Medicare HMO is the least expensive option--usually no monthly payment--but you must use in-network doctors and you must have a referral from your primary care doctor to see an in-network specialist. There is usually no option to see any other doctors unless you pay entirely out-of-pocket.
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Essie, welcome! You are among friends here.

First off, have you talked to your husband's doctor about the hallucinations? In PD, sometimes the hallucinations are a side effect from the meds, meaning that the meds may need reducing, or an antipsychotic added to the "cocktail". Please read this article:

https://www.healthline.com/health/parkinsons-and-hallucinations#hallucinations

Second, you sound so overwhelmed and close to burnout! It is good that you have supportive family, but sometimes, talking to a professional can really help you sort out and prioritize what needs to be done when. Can you find yourself a social worker/therapist to talk to? Keeping YOU well is an important priority in the management of your husband's disease.

About the out of network bills; please call the doctors and talk to them about the fact that you didn't realize you were out of network. Ask for a reduction; if there is a hospital network involved, talk to the Social Work department and find out about what financial resources are available for folks without insurance.

As to buying another place, have you considered looking at supportive living places, like Assisted Living facilities? As your husband declines, it would be nice to have help right outside the door.

(((((((hugs))))))))) and I hope you'll update us on your progress.
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EssieS Feb 5, 2021
Good Morning, Barb! Thank you for the welcome. I finally feel among friends who actually understand. Since a lot of you are older, it helps to know I'm with people who understand what it's like to lose someone by slow degrees, someone you've loved since you were a girl.

I took the link and read the article you sent. It was scary but informative, but I'm a believer that if you don't know the truth, you can't help yourself. I've also felt close to burnout because when this began, we were coming off several really bad years. So yesterday, after reading all these posts, I did ask for more help from my sons and they agreed. I feel better for having asked. I did have a therapist, but when I changed insurances, I lost her, and because of complications with my family of origin, I've gone through most of my life without friends. This whole mess feels like too much of a load to discuss with the one friend I do have.

Yesterday, one of my sons said the same thing about the bills that you did and I think he's even going to do the calling to the billing department. Both my sons have asked if I'd like them to 'take a night shift' periodically, so I can rest. I still can't get through a sentence or a doctor's appointment without crying, but this all can only help me, and that will help Bill.

Thank you so much for all you said.
--Essie
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Essie, I'm sorry you are having to deal with all that. It's a lot for sure. Probably too much right? It sounds like it's time to place your husband in the appropriate facility, where he will receive the 24/7 care he needs, and where you can get back to just being his wife. You know that he will only continue to get worse, and if you're already "overwhelmed, tired, angry and filled with grief," that too will only get worse. Have your family help you start looking for the best place for your husband to go to. If you don't, you will be in the statistics of the caregiver dying before the one being cared for. Please take care of yourself.
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EssieS Feb 5, 2021
Dear Grandma,
You sound like a survivor of the wars too. I'm so glad I found you, or you found me--I don't know which. I do need to be more 'just his wife' again. He misses me, I think, and he hates to see me working so hard at my age. We were poised to finally be off the clock, to start enjoying, then came a big surgery for him, a recurrence of his lymphoma, covid, and now this. All in the space of 18 months. It's bitter.

Now that I've found him a good doctor, and we have better insurance, I'm going to see how things look once they settle. I realize that because of the vicissitudes of this disease, there will be moment to moment adjustments. I don't like that, but I hope I can adapt.

Thank you for writing me. I haven't got many outlets to vent, and it so helps to know you understand. --Essie
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Essie,

Start anywhere you like. It’s overwhelming trying to express ourselves about emotionally charged topics.

It is completely obvious how much you adore your husband.

How wonderful that you and your husband have shared so many years together.

My mom has Parkinson’s disease and watching it progress is heart wrenching.

I am so sorry that you have been struggling with caring for him.

It’s the toughest job ever! Even though we attempt to do our very best, sometimes more care is needed, that we simply can’t provide by ourselves.

It’s difficult to make changes in our lives. We are never quite prepared.

There is no shame in asking for or needing help. In fact, it takes strength to allow others to help.

We don’t have to do it all. As I typed that, I have to admit, I struggled horribly to reach that point!

So take a minute. Process it all. Take a deep breath and even cry if you need to.

Then step back, grieve for the man that you once had. Cherish the glimpses of his old self, and carry on.

Speaking of those old moments, they are rare and so very special.

I took care of my dad and he was a different man after his stroke. He fought tremendously hard to improve.

Every now and then he succeeded in expressing a completely clear sentence!

I felt exactly as you described, I felt like, that is the dad who raised me, that I know and love so dearly.

Then in a heartbeat, he was fumbling his words.

Once, he called himself stupid. It broke my heart.

I told him that he was one of the smartest men that I knew, and that the stroke was causing him to mix up his words.

Yeah, those moments are beautiful and heart wrenching at the same time, aren’t they?

Transitional times are the most difficult. I feel for you and your sweetheart.

May I call him sweetheart? For some reason your words remind me of young love that has never faded.

Take care, dear lady. Please consider getting help and much needed rest.

Hopefully the Covid situation will improve as more become vaccinated and you can visit.

Your husband would want you to be at peace and have joy in your heart.
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EssieS Feb 5, 2021
Dear NHWM,

Yes. You may call my Bill 'Sweetheart'. So many see just a gray head and don't know that young love doesn't always dim with age. They see a 'cute' old couple, they can chuckle at. It becomes increasingly difficult as we age, so when he got PD, I started carrying around a picture of us from the year we met--1969--so that others could see who they were actually treating. But when I got the, "Aw, that's cute," one too many times, I stopped showing it. I wanted them to see his sparkle, the intelligence in his face, the strong body. But instead, they just saw an impossibly old photograph of a summer, long before any of them were born. They don't understand yet, but they will, since it comes to us all.

And yes. Bill does want me to be at peace and have joy. So thank you for seeing him for who he is! ---Essie
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You have a lot on your plate to deal with! Make a list of all the things that need to change and prioritize them.

I would think the #1 thing to change ASAP is the insurance coverage. Quick lookup says moving out of state IS a qualifying event, allowing you to change coverage. Call the insurance provider and ask what plans are available in your area and if you have new doctors already lined up, have them check to be sure they accept the plan you choose.
While doing this, perhaps try the suggestions made about contacting the medical providers, to see if they can cut down the bills or set a payment plan.

Second item on the list is to ensure POAs, guardianship and finances are set so paying for a facility won't drain all your assets. You should arrange to meet with an EC atty, so that all needed documents are set up and finances/assets are split so you won't be left destitute. You're currently living with family, stay with that for now. I suggest guardianship because your husband sounds like he might be beyond capability to assign POA (IF you already have that, you shouldn't need guardianship, but you'll still want to see EC atty to address the asset/finance division.)
While meeting with the EC atty, have them determine if he might ever qualify for Medicaid. The sale of the home will likely mean he will have sizable assets, so those would have to be used initially to pay for the facility. You can also use some to prepay for funeral expenses, if that hasn't been done yet. If he would qualify when the assets are nearly depleted, you can apply for Medicaid, if his income is low enough for the state you live in.

Once you have a new insurance plan, reduced bills, and can get the legal paperwork set, then you can start exploring facilities in the area. Between the first 2 tasks you can start online searching, making a list of all the places nearby (MC is likely best, as AL won't be sufficient for him. He might qualify for a NH, which is even better if he ever needs Medicaid. Most states don't cover AL and MC.) Hopefully by then they will be able to allow people in, so you can take tours, and check the places out in person.

While it might seem cruel to put him in a facility, he's not going to get better, only worse, and it'll become more difficult for you to provide the care he needs. Once he is there, you can visit with him, and enjoy those brief moments when his eyes sparkle and his old self shines through, without all the care tasks to wear you down!

Also, when the insurance issues are settled, as someone else suggested, it might be a good idea to review his medications with new doctors, and see if there are some changes that could be made to help reduce his hallucinations, etc. It might require a neuro and even a stay over for them to come up with the right medications.

Once things above have stabilized, then you can take a deep breath and consider your own needs for the future. While it's nice to have your own home, you're reaching that age when home maintenance is something you might want to avoid. Condos are nice, as they take care of all the outside duties, such as painting, lawn care, etc, but condo fees can add up too. Apartments can be an option, where again you wouldn't have to deal with maintenance, and there wouldn't be condo fees or RE taxes to worry about. If you have or anticipate any physical limitations, it might be a good idea to consider AL. More expensive, but they take care of even more, as needed, such as cleaning and laundry. You'll have many options, so take your time and consider all of them.

So, take a deep breath and make that list. One step at a time and you'll get there. As each item is taken off the list, you'll have less and less to stress you out. Try not to think about the remaining items when working on the first ones. Worrying won't make them go away, it will only stress you more! Tackle them when you finish the other items!
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TerriannR Feb 5, 2021
Jeez, You’re GOOD!! If I ever need help I’M calling on YOU 😀
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Good Morning Essie,
my name is Terry. I signed up for this website because I saw you reaching out for help. I have PD , but this is not about me, I would like to help you somehow, if I can.
So, it sounds like you are going through quite a lot right now. I’m sorry that it’s so difficult after having such a lovely life together for more than 50 years!
To be honest, I’m not exactly sure how I’ll go about helping, but i can at least be an ear for you to get “ things off your chest“.
If you don’t mind me asking what state are you from? Perhaps I can find you some resources to help with some of your issues. To start with, I was wondering if you knew of The APDA? The American Parkinson’s Disease Association. Let’s start there and see if we can get you some help, because you and your husband, are Why they are in existence!! Okkie Doke? ( that’s what my grandma used to say) 😉

PS I’m young onset PD. Have had it for just about 10 years. 😛 I’m 58 now. Just a little back round. OhYa.. and married 34.
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EssieS Feb 5, 2021
Hi, Terry!
You're a cheerful breath of fresh air! I'm so sorry that you deal with this awful disease, and I hope you have many loved ones around you. I'm sure you do, since you sound so upbeat.

We live in the Denver area, and we've gotten Bill into a great clinic. As I told another person here, it was hard going at first--lots of big, surprise bills--but with our new insurance every, single one of his docs is in-network and I feel much more relaxed about life.

You will be a tremendous resource for all here. I have so many questions about how this feels to the patient. What it does to your emotional well-being. Men in general, I think, don't always want to tell that stuff, and if they see their wives struggling like I am, don't want to add to an already pretty big burden. Bill goes to a speech therapy group called the Loud Crowd--have you heard of it?? I'm always trying to get him to ask the men questions for me, but of course, he won't. So thank you for offering your 'services'. I will call on you from time to time, if I may.

Thanks a lot for answering. I just can't believe how nice everyone is here. I needed this so bad!
--Essie
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Hi Essie, Glad that you are feeling a bit better. I responded earlier today and apparently I sounded like a guy🙈🐽!!
Anyway , I’m a Gal 🙋‍♀️😄
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EssieS Feb 6, 2021
No, you sounded very feminine! We know you're a girl!
--Essie
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Sometimes dietary intervention can help. Many folks have noticed an improvement by lowering their carbohydrates (sugars and starches) and increasing their protein and healthy fats. You may want to investigate the keto diet.
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newbiewife Feb 6, 2021
With PD, if the person is on carbidopa/levodopa (sinemet), which is the usual treatment, you have to be careful about protein because it interferes with the efficacy of the medication. The C/L should be taken at least 1/2-1 hour before meals or 2 hours after, especially with meals that have a lot of protein. Reducing protein but having whole grains, fruits and veggies, and healthy fats can be helpful.
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So many great responses. Yes, this group is wonderful! Nothing for me to add, except to say best wishes and peaceto you, both.
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EssieS Feb 6, 2021
Chickie,
Thank you so much!
---Essie
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YOuellette continue to have good and bad days with hubby.

If he doesn't recognize you one day, be understanding a Plat Roll to be a Caregiver til he knows who you are.

Keep in mind, it isn't his fault.

Aa far as your bills, don't worry about them just let them know you thought your Insurance would cover it and tell them you can only afford to pay $25 a month toward the Bill and follow thru..

In regards to the house market, you might check in to living in an Apartment complex just for Seniors and wait for a house that you can afford comes on the market or settle for a house that isn't your first choice but you can afford now.

Prayers
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EssieS Feb 6, 2021
Hi, Bev,
I have decided to pay what I can. Thanks for the suggestion. We are also looking into apartments and since we live in a big place, there will hopefully be some to choose from which are near Bill's clinic.

It's the very up and down nature of this disease that I find the most daunting. It isn't even good or bad days yet. So far it's good or bad hours. I feel off-balance all the time, one minute talking to my husband, the next talking to a confused, sick man. I'm having a hard time with it.

Thank you so much for your advice and support. I feel better for coming here.
--Essie
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Just a small note. When you are discussing bills with the provider's office people, ask them what insurance plans are easiest and best. They have another inside view, and can be very helpful. They are probably in the same boat as the rest of us average income people.
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EssieS Feb 6, 2021
Hi, Moxies,
Unfortunately, I jumped to a plan before coming here. I wish I hadn't, but things were out of control. But I do know one thing: they ALL said the insurance I had was impossible. Every, single one. I haven't heard anyone say anything bad about my new insurance, but it's early days, lol.

Thank you for the welcome!
--Essie
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"I still can't get through a sentence or a doctor's appointment without crying."

Dear Essie,

I hope what I'm saying here won't come across as "trite", but I'd like to offer a suggestion--it would be helpful to write or type out what you want to say before going to an appointment with a doctor or anyone else, and then providing it. Just about anytime I have an appointment, I type and print a sheet I hand in when I arrive (or even earlier if possible). This allows me to organize my thoughts at leisure (and any emotional aspects are handled at home so I have time to re-gather my thoughts to express them without worrying about the clock running during the appointment) so I don't overlook anything relevant or important, it provides a written record to eliminate or at least minimize misunderstanding or misinterpretation of my points (and of course I have my own copy), it immediately provides background information on what I would like to discuss, and the professional person can read it faster than I can tell it, thus saving valuable time (and even more so if it has been read before my arrival).

I believe any professional worth that title will be happy to receive this information, both to define the situation and provide relevant details, and of course I add that s/he is welcome to ask me for clarification or additional details on anything I've written.

It's certainly OK to cry, but I figure my suggestion can help you get the most out of appointments in spite of it.

Whether you choose to do this (perhaps you already do) or not, I hope you find the people in your new location who can advise and help you as you help your husband. And, of course, we are all here to do what we can to help.

I have a longtime friend/colleague across the country who is dealing with PD (as he put it, "I've been dealt the Parkinson's card"). I haven't seen him for a couple years, but we're in touch and I hope later this year the COVID issue will make a visit possible. His considerably-younger wife is a physician which should certainly be of some benefit. Once I learned of his condition, I was motivated to read as much as I can about it.

The "bottom line" is that we, on this forum, care about you and want to help you to get through a challenging situation--but I believe you've already discovered and realize this!

Bob
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EssieS Feb 6, 2021
Dear Bob,
Nothing you said was trite. I will for sure try your suggestion of writing things down and handing the paper to the doctor. I love to write things down! I keep a diary and have started keeping a PD diary for Bill to help clarify the day to day problems/progress to his doctor. I have also emailed his doctor and though I sometimes cry when I'm writing--as you say, so emotionally charged--but I'm much more succinct when I know I only have 1000 characters to get the point across.

When I read your last sentence, in fact, I cried again, lol. Yes. I have discovered that on this forum people care. When we found out about Bill's PD, his sister and mine both bowed out of our lives. You may think it was because they couldn't stand to watch what was happening. However, it was in reality, their desire not to be bothered with something as heavy as this. I've been alone in this except for my two sons, and how can I tell them that I'm grieving for my lost love and all he's been to me? I am so grateful to have found you and others here who understand. I feel I need so much emotional support that I'm a load atm. Maybe I will start to recover a little now that I have all of you. Thank you so much.
--Essie
PS I hope you get to see your friend soon, and I'm sorry for his trouble.
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God bless you, Essie. We are all overwhelmed at times and sometimes all the time. Many wonderful suggestions have already been written to you. You will use the best of them I am sure, one at a time. Assisted Living residences may be just the ticket rather than purchasing a home. Helpers on hand. It made a marked difference for us and our Mother. Remember to take care of yourself ; taking care of you enables you to take care of your husband. Wishing you calm days!
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EssieS Feb 6, 2021
Hi, Lynn!
Sometimes I feel there isn't time for me. Not even at night. That's a problem I don't know how to solve. I can't nap when he does because I'm so wound up all the time, I can't fall asleep. One night after he'd had several very pugilistic dreams, I had to leave our bed and sleep on the couch. In the night, he got up without me, walked through the living room and up a flight of stairs.

As you know we aren't in our own home. We don't have our big bed where I can sleep away from him if he starts fighting with someone in a dream. This place is unfamiliar to him. I feel I can't leave him alone in case he forgets how shaky on his feet he is--which he does all the time--or he wakes up and I'm gone and gets worried.

So I just keep trying to do what I can, for him and myself. Thanks for taking the time out of your own life to answer me. There is much generosity on this board.
--Essie
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I’m in nearly the exact situation. My husband, 66 years old, has Parkinson’s and by all evidence he has severe dementia as his primary symptom. He imagines people are tapping into his computer, he thinks he doesn’t have health insurance and that they’re building court cases against him to collect. Worse, I cannot get him into a doctor — he refuses to go. I had a long talk with an excellent support nurse at Parkinson’s foundation and that help me clarify how difficult our situation is And I’ve stopped blaming myself for not being able to solve it. I’ve contacted an elder attorney, I’ve spoken to social workers, I’ve been talking to a consultant to help me figure out how to do a long-term health care insurance claim, and I’ve been talking to assisted-living facilities. I can’t even begin to figure out how to get him what he needs as long as he insists he won’t see help I can’t get him to go to a doctor, he’s panicked that doctor visits will cost him a lot of money no matter how much I tell him he doesn’t need to worry about it now I have it taken care of. I’ve spoken to the nurses at the doctors office — No one seems to think we can do anything until I can get him to a doctor. hoping that when other family members can travel that they will come here and we can work with him together. In the meantime, I’m Taking care of him but I’m not living in my own home—It’s an awful situation by all accounts but I’m taking it a step at a time.
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EssieS Feb 6, 2021
Dear Mabelle,
I'm so sorry for your trouble. And your husband is so young too. In my opinion, the mental stuff is the hardest to deal with. I'll push Bill in a wheelchair till I drop if he just 'stays' with me and I have his companionship.

I need to look into long-term care insurance. I worry that if he ever needs a NH I won't be able to afford a good one. I want so much for this to work out for us. I want him with me in our home, whatever that entails, until the end. We've got our Wills and POAs, so we're set there. I think our insurance is okay. I can find my way to the clinic through traffic, finally. Now we just need our things around us and a home. If I had known he had PD, we would not have sold our house. It was perfect, and I think the familiarity of it would have helped him--and me too, immensely.

Bill resisted help for a time too, and when he got forceful with me about not asking, I always gave in. I did it until I was so exhausted I told him that if I failed at this things would go pear-shaped for him too. I told him that our main goal was to keep ME on my feet and that meant I needed help. I can't always get a 200# man up off the floor. I know your case is different. You may not be able to reason with your husband now. Can you just put him in the car without telling him where you're off to? Would he be okay with the doctor once he got into the office, do you think? I'm so very sorry for your trouble.

Please keep in touch. All this is made so much worse since we aren't home, isn't it? Thank you for taking the time to answer me. My thoughts are with you.
--Essie
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Dear Essie,

I can't add any more advice than what has already been given. I can empathize, however. My husband of 41 years has dementia, and I feel your anguish at watching him change from bright, funny, creative Gary to a stranger who refers to me as the maid, or the bed partner, or that lady that disappears when I need her. All I can offer you is understanding and a huge virtual hug.
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EssieS Feb 6, 2021
Dear Maple,
Oh, I'm so sorry. Watching who they are disappear is the most crushing aspect of this. That's what I grieve. Not that he can't walk, or that his voice is different, or any of the other awful things that have happened to him. I hate seeing him suffer and lose the things he defined himself with. But for me, I miss his bright eyes, his intellect, his wit. I miss him so much.

Hang on. Watch for the glimpses, as I do. Cry to me when he leaves again.
--Essie
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Ms. Essie -
It sounds to me like you feel overwhelmed and sad with all the changes.

It is a lot to manage, but nothing needs to be settled in one day. May I make a few suggestions - and get family to help you with this.
1- See a lawyer who specializes in elder law. Have the lawyer draw up powers of attorney for medical and financial for yourself and your husband. Name reliable people to take the burden of making decisions when you can not. I would have yourself listed as primary person for your husband with another person listed as secondary (in case you are in a situation where you can't make decisions for him). Make sure that your will and your husband's will are up to date. Discuss advanced directives. Have a trusted family member take you and your husband.
2 - Talk to the offices of your husband's and your doctors to ask about which insurance companies and plans they deal with. The staff can let you know which ones might be better for your needs. Call those insurance companies ask them to send you information. Do not let them pressure you into making decisions until you can look at a few plans side by side. Ask a family member who has trusted judgment to look over these plans with you and give suggestions. Change insurance plans when you are ready. Until then, commit to paying what is reasonable for your budget to health costs that have already accumulated.
3 - Schedule a talk with your husband's doctor and/or nurse about your husband's PD. Ask for a "timeline" that shows the usual progression of the disease and suggestions for dealing with issues. Let them know about problems you are currently dealing with. Many times the doctor's office knows local resources to contact to help with issues you are facing. Ask a trusted family member to be there at the meeting and to help with contacting resources.
4 - Make your health a priority. Please make sure to get 7-9 hours of uninterrupted sleep daily, 3 good meals daily, "time off" to relax, and time to address your own health issues. It might be wise to ask for a mental health referral to deal with your C-PTSD and coping with your husbands PD.
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EssieS Feb 6, 2021
Dear Taarna,

Thank you for hearing my sadness. I feel as if-- to many people--I just sound like a complainer. And you sensed my urgency to get this all done, to get settled to just be able to live. I'm trying to slow down.

Oddly enough, we had our wills redone just before this happened. So we are ok there. If I had to worry about that too, I think I'd probably fold. I had cancelled an appointment to talk to a staff member about PD, but will call and reinstate the appointment on Monday on your advice. I put it on my calendar. I have some problems of my own--managing fear especially--and if someone can give me any small idea of what my future looks like, it will help.

Thanks so much for answering me. It was kind of you.
--Essie
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I just typed for ten minutes and my response disappeared! Here is shorter version. My husband is stage 4 Parkinson's. We moved from Florida to Delaware six years ago because of his illness. We have regular medicare with AARP United Healthcare Plan N for our insurance. We only pay $20 for office visits. Everything else has been covered including an electric wheel chair and Duopa. If you have not heard of Duopa, look it up online. It's Carbadopa/Levadope in solution pumped into my husbands intestines 16 hours a day. No freezing! easy to do once you get used to it. He has hallucinations. Takes quetiapine. At first made him sleep for long hours - I talked to doctors and then gave thanks for the quiet. When he was having hallucinations I learned it is best to treat what he is seeing with respect. I asked him to describe them, to tell me what they were doing. Where were they. Then I reassured him he was safe. I did various things to try to eliminate them. One night I shooed them out the front door for him. I wasn't sure who was the insane one that night! I've learned not to panic. To assure myself that I am sane, that I am doing my best. And, I am better off having other people in the house with me - so I have assistants come in for a two hour shift each day. They shower him three times a week. They clean the kitchen, vacuum, etc. I suggest you don't try to live with just you and him and no regular help. My husband is incontinent. We use a night catheter - supplies paid by insurance with a prescription. We have an occupational therapist come to the house from Fox Rehab twice a week. She helps him continue to do the activities of daily living - things like walking safely, standing, etc. It's paid by our insurance. Notice that it is occupational and not physical therapy. I have been at this since 2004. You will learn. You will grieve, but you can get it done. You don't need to do it all yourself - you only need to learn what is available and manage his care.

I go outside to get my newspaper every morning and stand in the doorway and admire the sky and take several deep breaths - I didn't say sun because we have lots of cloudy weather!

On hallucinations, my husband is sensitive to the color black - whenever there is something black nearby he imagines its alive and something it isn't. Strange, but I eliminate dark colors hanging. His pants hanging over a chair come alive! You have to smile at that one! There is humor in some of what happens. We have to look for it so we can find reasons to laugh. Only someone living through this would believe our stories. Best wishes to finding your way. I am 76 and my husband is 79.
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EssieS Feb 6, 2021
Dear Carolyn,
My heart goes out to you with your husband in stage 4. He's the same age as my Bill, but his doctor says he is in stage 2. I was surprised he didn't think Bill was worse, but it relieved me. To me, he seems so very sick. I guess it could just be compared to what he was.

We have almost exactly the same insurance you have but it's UHC through ATT. It's good insurance, I hope. I've heard of the meds that are pumped into the intestines. The C/L sometimes makes Bill vomit no matter how we work it. He's lost a shocking amount of weight. The scale says 198#, but I have trouble believing it. He's so thin.

Where did you get the assistants? I have wondered what good they could do me, though many have said I should have someone in. I would rather mostly have help with chores than with Bill. Laundry, cleaning, cooking. I also am surprised that OT does better than PT, but I see the logic. I will take that advice too. He needs help turning, he keeps wanting to back up. I'm trying to get him a special walker, but they are months behind.

I'm glad you can find humor in your situation. Bill and I both have very dark senses of humor, so we laugh sometimes too. Bill's hallucinations don't scare him--only me--so we are so lucky there. He mostly sees our children and cats. He's a sweet man.

Thank you so much for your reply. I want to stay together like you two have. You sound so strong. I hope I can be as good a mate to my husband as you've been to yours.
--Essie
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Just wanted to add that I saw a therapist for myself for a few visits. She told me that "anger is the handmaiden of anxiety". I now take a small dosage of an anti-anxiety medication and it has done wonders for my emotional stability. Remember, I've been at this since 2004. Parkinson's is not something one "catches" - it is diagnosed after probably years of accumulation of minor symptoms until they become a critical mass of symptoms that gets diagnosed. It's a surprise, but you probably have been living with Parkinson's longer than you realize.
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EssieS Feb 6, 2021
Dear Carolyn,
I'm very unused to anger. More used to depression. This is new for me and I'm not handling it well at all. I feel like a shrew. I have a prescription for tranx, but don't take them except to sleep. Maybe I'll try a low dose during the day periodically.

The doctor said the same thing you did about the minor symptoms being overlooked early. Or blamed on other things. Looking back, we can see. I've heard that stress can make worse symptoms come to the fore. Bill had a huge back surgery just before he was diagnosed. He was recovering, we were happy, he was walking 30 minutes a day, he was tall and straight. Three months into his rehab he said, "Something's wrong." And it was. It went fast after that.

Thanks for the help. I'm trying to get back with a therapist.
--Essie
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Consider moving to an assisted living facility, where they will handle a lot for you and it could simplify your lives. There are some facilities where you can begin in independent living, and move to assisted living only when needed. In my state, these are called "continuous care" facilities. Try to simplify things. You might want to consider upgrading your insurance to PPO so that you won't have so many out-of-network issues. My mother had a policy throug AARP that moved with her across state lines.You may want to speak with a social worker or counselor in your state to find out what the options are. As we get older, we do a favor for our family if we live close to them. All the best to you!
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Dear NY,
We're looking into apartments and AL. I've seen the continuous care ones, and you're right, they're so appealing and look simple. What I don't want is to ever move again. We just changed insurance to one through my husband's company. I hope it does better for us and all his doctors are in-network. Fingers crossed it all works out.

Thank you so much for replying with such wonderful suggestions. I can't believe how smart and welcoming and compassionate all here are. I'm getting so much practical advice, and I know once I take care of the practical aspects, I can just concentrate on my husband.
--Essie
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EssieS: I did see your update from one hour ago. I am glad that you're switching to in network medical insurance. Yes, your husband may require facility living. Prayers sent.
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EssieS Feb 7, 2021
Dear Llamalover,
Thank you for your prayers.
--Essie
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I’ve always “lurked” on this site but feel led to write you some more. My husband also got very much worse after back surgery in 2010. He was walking and doing well and suddenly wasn’t! He had a fusion in his lower spine in which they built a cage to support the involved vertebrae. It took several years, like four -five until the pain doctor in Delaware discovered that a screw had come lose and was pressing on nerves. A surgery to repair it would be lengthy and anesthesia is devastating to Parkinson’s so we have to manage it with shots.

in Florida we saw a regular neurologist for the Parkinson’s. We now see a movement disorder specialist and he is more knowledgeable about The details of Parkinson’s.

best wishes.
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EssieS Feb 7, 2021
Oh, Carolyn... All this makes me just sick. Your story and mine. The sick part of all this is that if we had known Bill had PD he would not have gotten that surgery in the first place. It was 10 hours and as soon as he woke up, the hallucinations started. I thought it was the Ketamine they gave him to keep him under. Now I wonder if it was this finally making its ugly-self visible.

Before Bill went in for his back, I knew something was terribly wrong. He seemed as if he was getting 'enfeebled' and he began to lose weight. I thought his lymphoma had returned and started making the rounds of doctors with him. They all patted me on the head and told me not to worry. Nothing was wrong. I asked two of them, an insurance doctor and his PCP, point-blank if Bill had PD. They both said no. Go home and quit worrying about him. Then, I took him to two neurologists and two neurosurgeons, one of whom abused Bill and me verbally for wasting his time when all that was wrong with him was he needed to exercise.

I finally had to sell our house and make a 13-hour drive back to our hometown in a state most consider backward to get a diagnosis. By the time I got him there, he couldn't walk at all and fell out of the car onto the pavement. An ambulance ride and two hours in the ER and they told me what was wrong with him.

We couldn't find a suitable house there and lived in an upstairs apartment. You can imagine how hard that was. The house we sold here (we are back in CO with our children because we need the help) was perfect, and now we can't find a house here either. We have gotten Bill in a good clinic now, which is a blessing, but he was grossly let down by the medical community in a state that considers itself a cut above. Angry doesn't begin to describe me.
--Essie
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Dear EssieS - so sorry you are going through this. It is true trial of love and strength. If at all possible, wherever you decide to make your home base, do look at the facilities called Continuing Care Retirement Centers -CCRCs. They are wonderful because they can provide a Continuum of Care and living as you age. You can move in as an independent living resident and then, as your husband or your needs increase you can move into assisted living and then into skilled nursing/ long term care if that's required. Be aware that CCRCs generally require a significant one-time entrance fee. After that, you also pay a monthly fee for whatever y living stages you are in; obviously the fees go up as your needs for care and assistance increase. I found the better ones in terms of finances to be not-for-profits. Well most of these facilities have beautiful settings and a great deal of activities for everyone to enjoy and offer wonderful meals. Again I have to stress that they can be somewhat expensive. Buying into this type of Continuum care is very much like buying a house so I urgently suggest that you listen carefully to the sales pitch, take someone with you if possible, and then have your attorney read the agreement before you sign. You want to know that certain things will stay in place even if the facility's ownership changes hands. I would also be diligent and look to see how Medicare rates their long-term care/ skilled nursing section. Try to visit the facility at least twice - once without any prior notification. And if it's at all possible, try to get a meal or even an overnight stay just to test the waters.
Not not sure where you're located but in the Northeast springpoint Senior Living and the Masonic homes are both very well known for their facilities however there are many others just take your time do a lot of research and asked a lot of people. Good luck on your journey and please keep us updated on your progress. Hugs and blessings to you and yours.
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EssieS Feb 7, 2021
Dear Geddyup,

Thank you! I'm going to research that. We're in the process of trying to get settled, but now.... we just don't know which way to jump. What you describe sounds perfect. Not all the extraneous work, and maybe I could just be a wife. I used to gripe about how hard THAT was. Now it sounds like a walk in the park.
--Essie
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Please make sure your husband is seeing a Movement Disorder Specialist. Their focus and expertise is in PD. For a recently diagnosed person, it is unusual to have such frequent hallucination but not impossible. Some drs like to use to many medications when with this disease in an older person ''less îs more''. Ultimately it is a fine balance. Documenting when meds are being given and how ...with or without food...and times the hallucinations begin can help dr. determine which meds to tweak.

It is a difficult and long term disease to manage. My hêàrt goes ôut to you. I took care of y Mum fôr over 14 yeàrs and it was very challenging and overwhelming.
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EssieS Feb 7, 2021
Dear Debbie,

Thanks for the advice. I had read he should have a Movement Disorder Specialist and that's just what he finally has. I realize that of all the medical disciplines, MDS Neuro docs have to use more intuition than most. It's not just a science but seems to be an art, as you have implied. His new doctor took him down on his L-Dopa and things improved immediately. I'm convinced that most of his cognitive problems are side-effects of meds.

We're living in a less than optimal environment for me to be able to fine-tune the delicate treatment this disease seems to demand. I hope I can get a handle on this before a whole year passes. I want him to improve as much as he can. But we still have to move at least one more time, and I am floored by what stress does to him now. I hope I'm up to this.

Thanks so much for the suggestions.
--Essie
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Essie , I’m so sorry this has happened to you , and your husband. Life can be so cruel at times . My husband developed ALS and our life’s were turned upside down . He had Bulbar ALS and it started with his speech , and then swallowing. He was funny and charming. He took care of any issues before this happened .I started having to deal with everything, DR’s calls , or any issues with our house .I know how overwhelmed you are , and lost . The rock we depended on is gone , while still with us .It’s so scary . It’s living in a nightmare . He lost his ability to eat , and had a feeding tube put in . He was able to live at home until he died , but I had a lot of help , caregivers, and then nurses and hospice . My heart is breaking for you.
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EssieS Feb 7, 2021
Dear Bichon,
I'm so sorry about your husband! I know how you feel! Mine is funny and charming too. He was capable and strong. Now I take care of everything, even the stuff I'm not sure how to do. The gone-but-still-there is such a hard aspect of all this, as I know most here can attest. I know none of us thought this would happen to us or our loved ones. I'm so glad we have each other.
--Essie
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Hello Essie,
I read in one of the earlier posts that you now live in the Denver area. I do too. And, like you, I arrived here later in life.

You’ve been given so much great information and meaningful words of support already. Mine are slightly different.

I am a dance teacher here and for several years taught classes for a National program called “Dance for PD”. It is offered through an excellent organization called Parkinson’s
Association of the Rockies which is a great resource for patients and caregivers alike. No doubt some of the offerings have undergone change due to COVID-19 but their support groups are terrific.
Even in a dance class designed for PD patients I frequently felt that the care partners were enjoying it as much, sometimes more, than the patients!
One aspect of moving to a new place at our age is the need to find new friends and develop a social life (support system) apart from one’s grown children. So I’m suggesting that you might well find this through the Parkinson’s Association activities.
Please feel free to reach out to me if you think I could be of assistance. I wish you all the best as you navigate these waters.
Linda
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Hello Essie,
I read in one of the earlier posts that you now live in the Denver area. I do too. And, like you, I arrived here later in life.

You’ve been given so much great information and meaningful words of support already. Mine are slightly different.

I am a dance teacher here and for several years taught classes for a National program called “Dance for PD”. It is offered through an excellent organization called Parkinson’s
Association of the Rockies which is a great resource for patients and caregivers alike. No doubt some of the offerings have undergone change due to COVID-19 but their support groups are terrific.
Even in a dance class designed for PD patients I frequently felt that the care partners were enjoying it as much, sometimes more, than the patients!
One aspect of moving to a new place at our age is the need to find new friends and develop a social life (support system) apart from one’s grown children. So I’m suggesting that you might well find this through the Parkinson’s Association activities.
Please feel free to reach out to me if you think I could be of assistance. I wish you all the best as you navigate these waters.
Linda
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Essie , I just read your reply . It’s so hard to watch a loved one change , and I know how scared you must be , I was , and I still am some days . Quad your husband in the military ? If so they offer many benefits to disabled vets . Sending you hugs .
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EssieS Feb 9, 2021
Hi, Bichon,

He was in the military in the 50's and, believe it or not, the two years he was in were not during wartime, therefore, he's not eligible for anything. We went to the VA three or four years ago, then I got in touch again after all this happened to see if we could get help with the bills. They offered him a Covid shot--which was nice--but that was all.

I hope things get better for you. It's awful what you and others here have had to endure. Sending hugs back.
--Essie
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Hi Essie - Geddyupgo here just checking in to see how things are going for you. Has your husband been able to see the Movement Disorder Specialist and is he still improving on the adjusted meds? I hope so....this is a long and hard road but you will come out the other side just fine. And don't be so hard on yourself. If you are a Christian...... review Christ's mantra........... forgive yourself.
Also when you have time (yes, that is a joke!) check out the Dance for PD program. I don't know anyone who has participated in this program but I know that music and dance can make an extreme difference in the movements of people with PD. Was at a seminar years ago and we saw one lady who could barely stand let alone walk. They put the music on for her and started to assist her in walking down the hall. It was painful to watch ..... for about 45 sec. In about 2 min she was literally down that hallway totally without assistance! It was like watching a miracle. There are probably a lot of similar programs out there and maybe your doctor can recommend one he likes. Keep us updated.
Peace
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Glad to see you are getting good advice. I have PD, an early stage recently diagnosed. I immersed myself in getting info and therapy ( speech, occupational and physical) that has helped a lot. Just wanted to remark on the mention of the VA. Was your husband in Vietnam and possibly exposed to Agent Orange? If so, PD is one of the diseases that will qualify him for a 100% VA pension that might help financially. The VA is doing some work in research also. In some areas there are VA support groups for PD patients.
Also suggest looking for PD caregiver support groups and additional resources like the Davis Phinney Foundation for Parkinson's. There is a lot of useful information on YouTube if you can find the time. I'm currently reading the book Perseverance by Tim Hague. He has Young Onset PD, yet won the Amazing Race Canada with his son Tim. Got the book after seeing his live presentation thru the the Cleveland Clinic Lou Ruvo Brain Center in Las Vegas online. And by the way, if you want to see an architectural depiction of a brain with disorders, Google their website to see it. The picture is stunning, but the first time I saw it in person it took my breath away. Good luck and look for the support that can be there for you.
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