I don't know what to ask or where to begin...any advice?

Hi, Essie
We all (patients and caregivers) get mad or frustrated with PD now and then. The trick (and that’s a HUGE trick!) is to soldier on anyway, empower yourself with knowledge of PD, get to grips with whatever PD throws at you, adapt, overcome and get on with life.
Acceptance seems to be a daily activity instead of something you do at one point in time.
The ‘wolves’-metaphor comes to mind:
Indian grandfather to grandson: Inside me two wolves are fighting.
One is evil - he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, self-doubt, and ego.

"The other is good - he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith.
"This same fight is going on inside you - and inside every other person, too."

The grandson thought about it for a minute and then asked his grandfather,
"Which wolf will win?"
The old chief simply replied: "The one you feed.

When you are going through toughest of times, click on the link and watch this video https://bit.ly/30iaHU9 it empowers, is knowledgeable and gives full info on how to help yourself and live with PD.

Hi Essie,
I feel for you and your husband. PD is an awful illness. I really don't have an answer for you, but if there is a place that offers the Rock Steady program, you might want to look into that. My husband participated in it until the Corona virus shut down the gyms. My husband too has PD. Well, let's just say it seems my husband being going down hill with being in hospital twice last year for UTI's and sepsis. Anyway, anytime you want to talk, feel free and shoot me a private message. God bless you.

Essie, just a few comments about Dance for PD.  Check out the website, sign up for e-newsletters, and watch the videos.    I first saw a video on tv, signed up for the newsletter b/c I was so impressed with adaptations of dance by professional ballet dancers to a movement disorder.    

If you watch the videos, you can see how chair exercise has been adapted for sitting or standing movements.  

Videos are also available for home use.

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.

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

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 .

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

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

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.

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.

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.

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.

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.

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

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!

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.

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.

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.

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.

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.

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!

"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

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.

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

So many great responses. Yes, this group is wonderful! Nothing for me to add, except to say best wishes and peaceto you, both.

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.

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 🙋‍♀️😄

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.

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!

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.