I don't know what to ask or where to begin...any advice?
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
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.
Thank you for all the advice and especially, the compassion I hear in everyone here. I'm 72 and my husband is 78, so we've done a lot of what you suggest, as we striven to protect each other and our heirs. We do both have good wills and POAs in place and I've kept diaries for 25 years. I write everything down--to the point of tedium!
Everything you said about the drugs is so true! The side effects are awful, and I sometimes wonder if the cure isn't treating him worse than the disease was. I thought PD was slower than this, but it all went so fast, and that's part of the reason I'm having trouble coping. At times, I feel like a widow already--seeing this happen to such a vital, happy man is so hard. Not even medical professionals always know that this disease destroys more than the person who has it.
Thank you so much for your kind welcome, Alva. I hope your own situation improves. --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.
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
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!
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
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.
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.
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
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
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'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
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
Thank you so much!
---Essie
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