My husband is in denial

Posted by grandmaraines @grandmaraines, Apr 11, 2023

My husband has had depression and anxiety for years. He was referred to a neurological psychologist for testing. He agreed with my feeling he was in the beginnings of Parkinson's. Referred to a neurologist for further diagnosis. Had to wait 5 months to get an appointment. Things worsened in that time, but he did not see it. His gait was shortening, sometimes shuffled, unable to walk far, like 10 ft, without being unsteady, falling 3x, he was dizzy on standing, his arms rarely swing, handwriting getting cramped, hands shaking when carrying a dish of food,legs shaking constantly when sitting if not flat on the ground (I have a question on why he shakes feet/legs whole time but it stops when he sleeps- is that common?- is that common?). He has a mask look, has memory issues., complex tasks are difficult.
When he went to the neurologist he had to meet a "gate keeper" doc 1st who decided if he needed to see the main doc. My husband did not let me to go in with him, I believe knowing I would share all this. He was asked questions (he lied, claiming no issues with shaking and denied any family history- his mother died from it). I read the report and there was so much not true, but I had no permission to talk to doc about it. He said he saw no evidence of any need to see the neurologist, which validated my husband's denial.
So here we are, a year later and the shaking is worse, other signs worse and he talks about being anxious and feeling "lost", he sleeps almost all day, moves very little , afraid of unsteadiness, blaming his knee that he had surgery on. His gait is worse but cause afraid of falling. I truly feel he has Parkinsons or a similar tremor type condition.I know if I suggest we try to go back cause doc said return if symptoms worsen that he will get mad and deny he needs to. I am at a loss of what to do. He barely gets off the couch, resists any exercise, won't drink much water, skips meals as appetite is low, pretty sure i will need to intervene with him driving as his reactions are not great.
The longer he goes without some med and PT help the chance of slowing things down is becoming remote. How do I approach him ? He has a wellness visit coming up with regular doc (who is only a PA and I am not impressed by him) has anyone ever tried contacting a doc on their family member's behalf without their knowledge? Is there some rule against that? Cause I know he will deny anything is wrong, he barely talks to doc, and he won't let me go in with him. I am in despair as to how to help him.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 15, 2023

Hello @grandmaraines

As it has been a while since you first posted, I was wondering if your husband has been willing to seek treatment for his symptoms? How are you doing?

cwsjcs | @cwsjcs | Dec 22, 2024

Will be glad to have any assistance!

Teresa, Volunteer Mentor | @hopeful33250 | Dec 22, 2024

In reply to @cwsjcs "Will be glad to have any assistance!" + (show)

Hello, @cwsjcs, and welcome to the Parkinson's support group on Mayo Connect. As this is your first post on Connect would you be comfortable sharing what type of assistance you would like?

I look forward to hearing from you again. Please share, as you are comfortable doing so, if you are you the Parkinson's patient, or is it a family member who is dealing with this disorder?

sillyblone | @sillyblone | Dec 23, 2024

In reply to @cwsjcs "Will be glad to have any assistance!" + (show)

I will be glad to touch base. I can only share what I have learned over the years for my spouse. I am sure that this so overwhelming. Hugs

jrwilli1 | @jrwilli1 | Dec 24, 2024

I have called my husband’s neurologist office prior to an appointment before because yes he doesn’t have any new issues. He can full anybody in a short visit so I felt they needed to know of his cognitive decline. They were respectful to me and were able to see the decline by asking questions. Also next time I need to tell them about his legs constantly moving, his talking out at night and yes more cognitive decline. All this he says I’m making up. His meds do pretty much take care of the arm tremors. He has had Parkinson’s for 8 yrs. Call ahead to his appointment. You will fell better. They need to know.🙏

lynnmommie57 | @lynnmommie57 | 2 days ago

I had the same problem with my husband . He started having twitches in his thumb and it kept going. He finally went to the doctor and found out he had Parkinson's and he was so angry! He wouldn't discuss it at all. Finally he started having problems walking . He still would not let me even talk to the doctor. So I called and asked if he needed to see a Parkinson's doctor and he said he would set up the appointment. I think he understood how upset and did not have the knowledge to understand what I could do. Finally he went to appointment and he said he needed to walk in a walker; that's all! so I tried to give him help but the more I tried, the more stubborn he got. He finally got to a point he could barely hold himself up that's when I got really mad and told him that he was not the only one in this relationship; for good or bad and it was not fair to be treated like an outsider. I told him i loved him and if he loved me he and I would both go to this doctor. He finally agreed. well I found out a lot and starting reading books and going on net for as much info as I could get. He is now 82 at the end stage but is still at home because I refuse to let go to a home. However it is not easy. Far from it. I have PSW'S coming in daily. Nurses once a week. and the best part is I don't have to pay anything. He's now bed bound. He cannot use his arms and legs. He has trouble talking and swallowing. You have to have an extreme amount of patience. If you have relatives that can even give you a couple of days break it would be a heavenly welcome. you need breaks big time! I unfortunately do not have family to help me out. But I do pray a lot. I have 2 little dogs that make me smile and laugh. But let me tell you the most important thing to do for him. He gets depressed and lonely when I'm not in the room but I need to do other things. Laundry, grocery, cleaning etc. he gets very sensitive and needs quality time. It's better to be in there say to watch a movie with him than to pop in and out. Again not everyone can handle it alone. Sometimes you have to make a choice of where the best care is. And sometimes it's worse for him if he sees you getting upset with him and you will. It's just human. But again; Patience is the main key for home care. Don't feel guilty if you can't do it. A lot of people are not able to do home care. There's constantly changing him, feeding him and the money that you need for diapers, hospital bed and everything else can get very expensive. Think long and hard about this before having a chat with your husband. That's if you do. But be honest with him and make sure he hears the word LOVE a lot. that seems to be the only advise I can give you. I hope and pray this helps even a little. Good luck

katrii | @katrii | 2 days ago

You are an Angel! I am in the early stages, am hearing denial (which I listen to, but don’t say much)…but I see that if I’m in the came room it really helps ((knitting saves me!…as our taste in tv is different). I’m wondering what I could read to help me understand this journey we’ve just begun. Any suggestions are most appreciated!!! And Bless You for the care you’ve given your husband!)

joywin | @joywin | 2 days ago

It's difficult I know but you can't make someone do what they don't want to. Hopefully he will come to the realisation that he needs help. You can't diagnose PD as a layperson, even neurologists find it difficult, and there are so many neuro disorders out there. Maybe he has GAD and needs to see a psychologist or a psychiatrist and get some help with medication or therapy or both. Talking to a sympathetic person outside of family might help him.

Parkinson disease has been on the backburner for ever and it is only in recent years that more funds have been allocated towards research.
The medication currently used for PD was discovered over 60 years ago and nothing new since then apart from DBS.

Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago

In reply to @katrii "You are an Angel! I am in the early stages, am hearing denial (which I listen..." + (show)

Hello @katrii,

Wanting to learn more about PD is a great idea. I would suggest that you look at the Davis Phinney website. Davis Phinney is a leader in the area of PD research. They have lots of videos where experts in PD discuss the physical and emotional aspects of this disorder. Here is a link where you can find information and videos,https://davisphinneyfoundation.org/webinars/

How long has your husband been having symptoms of PD? What are his most troublesome symptoms?

katrii | @katrii | 1 day ago

I will definitely go to the recommended website. Thankyou!
He’s been having difficulty turning over in bed for a year or more…we bought a railing, which helps. His walking (especially backwards or turning around) is like a wind-up toy—little steps, unsteady. He’s just started closing his eyes often. He’s tried the standard medicine for PD, but it made his toes curl terribly, with pain. Brain MRI showed nothing. Also, he has bladder issues—every time he stands up he has to go, quickly. We’re seeing a new neurologist in February. I can’t wait! I feel I’m slowly watching him change/I know it’ s not about me, but it’s hard.