In crisis! How do I cope alone? Husband is appropriately in denial over new devastating diagnosis.
I've been on this site for my dad with dementia, who passed away in October. Now, my husband, who is my rock, has "REM behavior sleep disorder"- STRONGLY linked with Parkinson's and other degenerative disorders (70% have PD by year 10 and I'm guessing we're on year 5-8 or so). He is showing many other soft signs of PD and had very mild rigidity in one wrist on exam w a neurologist (who we did not like). The neurologist basically said that he "wasn't going to put a label on this" because we would just worry and there is nothing to be done. He said to come back in a year or as needed. All my husband’s 3 siblings, his mother, and 2 of his nephews describe similar frequent sleep disturbance. I do not know how often or how severe, but the neurologist said only that he is aware that RBD can be associated with dystonias. We are both retired from healthcare, and I am now noticing more signs- kind of like the lights came on- a light shuffle of the feet, constant clearing of the throat, and a slight slur of speech.
After the doctor visit, my hubby and I chatted, and he said he is just fine, that he is no different than his siblings, and they are all fine. I reminded him the neurologist said, "as these progress", and he again reassured me he is fine. He told our children he does not have PD. They are coming home tomorrow from school. I feel like I can't discuss this with anyone. I think this is possibly a healthy way for HIM to deal with this at this point in the story, but it prevents me from building support, and I risk not being a comfort to him if I keep sharing my concerns. I want to be his rock. However, I feel extremely anxious, shaky, and scared and have been unable to sleep, and have lost 6 pounds in the week since we met with the neurologist. I can't continue like this. How can I at least return to a steady state, and be ready for when he crumbles?
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My first question is what is being done to manage your husband’s RBD? He should be evaluated by a Sleep Disorder specialist. Understanding what may precipitate RBD, learning what can manage the symptoms and most importantly maintaining safety in your bedroom is first and foremost. A person with RBD can hurt themselves as well as a bed partner. Untreated sleep apnea can in many instances exacerbate it as well as stress and sleep depravation. Medications both prescription and over the counter can help control the behaviors. can control the behaviors.
Secondly, I would absolutely. Find a new neurologist. We recommend all of our RBD patients have a baseline evaluation so if and when changes consistent with Parkinson’s disease develop treatment can be proposed.
Accepting a difficult diagnosis is challenging for both the family and especially for the patient. It may take time. Education and safety with good medical management is my best advice.
Stage 1 - Denial
Stage 2 - Anger
Stage 3 - Bargaining
Stage 4 - Depression
Stage 5 - Acceptance
I would suggest finding a neurologist that you both like that can also be proactive in treating this disorder. It might be helpful for your husband to use medications for PD to treat his symptoms. If those medications work, he will have more years of good functioning - regardless of his diagnosis. In the long run, it is not about "the diagnosis" but about finding ways to have a "good quality of life" together. You may benefit from some time with a licensed counsellor to process your feelings, develop a plan of action for the future, and finding methods that help you cope. You can do this!
P.S. I am an RN.
DH opined that his cognitive skills are the same as ever. Doc asked me what I thought; I gave a few examples of his poor memory and his poor attention.
DH has not followed up with a sleep doc as recommended because he doesn't want to deal with a Cpap machine.
Doc said that cpap not the only solution. We danced around that a bit. I offered to get sleep testing too.
Husband stood firm. Doc did his formal "count backwards, what's the date, recall 3 words": results were about the same as last year.
Doc said, hmm, I don't want you to get dementia. Sleep problems often lead to dementia. DH pushed back.
Doc said, but maybe would you just TALK to sleep doc and listen to her/his suggestions, not cpap, since there is no way you're going to do that (this is a technique called "joining the resistance")
DH agreed to talk to sleep doc.
I suggested that re-test of neuropsych might be helpful as DH disagrees with results. With a different clinician.
Good neurologists are patient, take their time, size up the degree of resistance and work the territory that they land on.
We BOTH came out of that room feeling "heard".
It's time to get yourself to a Geriatric Psychiatrist can walk you through this nightmare and make suggestions on how to bring your husband in to a group meeting with you and/or the entire family.
Of course, it is understandable you are concerned.
Parkinson disease if indeed it is that as it is so often misdiagnosed progresses slowly.
My husband was diagnosed in 2015, for over 6 years except for taking levodopa there was no changes in our lifestyle, and we basically did not think much of it. He was very active and continued exercises for 2 hours almost every day, we travelled the world and enjoyed life.
2 years ago he fractured his hip from falling and things changed, but he recovered sufficiently, walks sometimes with walker, sometimes without.
Still strong and after few set backs he is back to normal, almost. As long as he takes his meds on time all the time, he is still only on levodopa.
He has no dementia, can learn another language, speaks 3 different ones, avid reader, knows every political and other events. Learning, retaining independence is extremely important. As it is exercise, eating right, socializing.
As PD will progress, but dementia is unlikely, so he is still the same person. Active, engaged in everything, certain activities are not possible as he was avid skier, runner, etc. We still live relatively normal life, adjusted our house with grab bars, walk in shower etc.
As progression is slow and people with PD don’t die from it, but, they are not immune to other diseases. Maybe as recent studies show more prone to certain conditions.
Please accept it, there is never definite diagnosis for PD, in fact, it is the most misdiagnosed disease, so wait and be optimistic, living normal life is most important.
My husband accepts it and he hardly ever feels sorry for himself, he is in good mood, there is no self pity and he does not want me to feel sorry for him.
Not that it’s the same with PD, but I have learned to appreciate optimism in the face of overwhelming difficulty. Perhaps DH will accept help if you switch from fear to we’ll get through this and it will be okay (even when nothing feels okay) — and you’ll be in a healthier place to help if you’re not stressing 24/7.
Sending hugs.
What are your thoughts about checking in with a Geriatric Neuro Psychologist every 6 months as opposed to a neurologist once a year or both? Doctors are like mechanics and a good hairdresser. You have to find the right match. One year to me sounds like too much time going by. I am not a medical personnel but I don't believe in grass growing under your feet.
With these diseases--any type of dementia you have to keep on top of it in any way you can--physical therapy, blood work, exercise, the right shoes, a structured routine.
I remember too, way back when, we "the family" first learned of mother's demise. Basically, this is the beginning of the end. The matriarch who held everything together, cooked, babysat, someone we went to when we were upset and needed a shoulder to cry on. Mom was our rock.
Upon Mom's first hospital discharge my eldest brother ran out the door and down the stairs, he couldn't handle it. I needed the support but he couldn't provide it.
In the early days when the news broke about Lewy Body, we were in the wilderness in the middle of a Pandemic.
In all honesty, I am being blatantly honest here, I thought I was going to throw up. I had such feelings of suffering but it did past. It takes time to accept a diagnosis before you can even think about how you are going to handle it and treat it from here on in. My siblings came around briefly at the beginning but it petered out--they can't handle it, not everyone can.
If you have a double whammy, your dad passed and then now your husband, you are probably in survival mode. The way I am now was not how I felt at the beginning of the journey.
You kind of have to ride it out, go to bed early, get up-- get dressed, put your make up on, make your bed, plug in the coffee pot, get our your Bible and ask God for the grace to handle what needs to be done. Don't forget to book hair and dental appointments, oil change on the car. The house and maintenance still has to run.
Read everything you can on the diagnosis, make a list of daily "things to do" and at a certain time, do nothing else. In other words you have to have an "end" to your day for self-preservation. Tell your friends and family, "don't call before 9AM and don't call after 9PM".
Go on the portal and keep up to date on all of hubby's test results. Put a list of meds on the refrigerator.
I run this, my dwelling, with military precision because of the responsibility of caring for a frail, elderly person. You have to put boundaries up and keep your house in order. You have to be the Commander of your ship--your household.
You have to be self-assured because now you are making decisions for the "both" of you. You may not have the backing of the family 100% but if you are in the trenches on a daily basis and your loved one trust you then be confidant.
I listen to others, read, pray, think about what has been said, thank them and send them on their way and make a sound decision.
But, it's hard when you don't feel well, you don't want to make decisions. This Parkinson's, Dementia, 1st cousin--Lewy Body, you learn along the way. Watch YouTube videos by Teepa Snow and occupational therapist who is right on the mark.
Many people have remarked when you are given the diagnosis of any type of Parkinson's etc. Dementia, they really don't tell you how to proceed from there. You walk out the door and pay your co-pay. See ya next year.
I would check a neighborhood reputable "medical model" of day respite programs. I didn't want to send my mother but I knew this beast of a disease wasn't going to go away and I need a place locally so if I have to have to go to the dentist, Mom is safe, fed and supervised. An RN is on duty.
Some offer transportation as you probably already know this from your background but I couldn't get a definite answer from my siblings, "what day are you coming this week", their response, "I don't know". I couldn't wing this and leave it to chance.
That's great that he's so active and that will definitely help slow down his eventual decline, regardless of whether or not he has PD.
You can get support here. Or talk to a good friend of YOURS.
So, enjoy the time you have together while hubby is still capable. As things progress, make sure you get help so you don't burn out. The first thing I did was add a housecleaner every other week. Then aides a few hours for a few days, etc. You can start thinking about how you will handle things, if and when things get worse.
Make sure your affairs are in order. POA, living will, will, etc.
Go on a trip together. Have fun. Breath.
My mother suffered with Parkinson’s disease.
Her Parkinson’s disease progressed slowly because she was diagnosed later in life. Her brother had Parkinson’s disease too. He lived to be 96 and mom lived to be 95.
People who are diagnosed younger have a more rapid progression of the disease.
Neurological disorders are devastating. There is no cure for Parkinson’s disease and I sincerely hope that medical research will keep plugging away to find better treatments and ultimately a cure.
Sometimes meds need to be adjusted for tremors. Mom was on Sinemet. She wasn’t a candidate for surgery that some patients opt for.
My mother didn’t sleep well at night. She started having nightmares as well. Her rigidity towards her later years made it even difficult for her to be comfortable. She did develop dementia towards the end.
I do agree with Newbiewife in regards to exercise for Parkinson’s patients.
My mom’s doctor ordered home health several times and she also went to a skilled nursing facility for rehab. It definitely helped her.
Balancing became an issue for my mother and she started to fall. The physical therapist will give specific exercises for strength and balance for Parkinson’s patients. The occupational therapist helped as well.
If there is a support group in your area, please go. All of us need support when going through these challenging situations.
Wishing you peace as you continue to care for your husband.
The one thing you might want to do and this is a "just because" everyone should do this...Talk to an Attorney. It would be good if it were an Elder Care Attorney. Everyone should have all their paperwork in order. Will Trust if needed, POA and you both should have POLST in place (I am sure since you both have been in healthcare you know how important that can be)
And you need to think about how he will be able to navigate in your current house. Stairs? Large enough bathroom? Easy access? Is now a time to move to a community that offers Independent, AL and MC if any are ever needed?
I think another thing to do would be to find a Neurologist that you like, it is important to be able to communicate with your Healthcare team.
One of the things you need to do is talk to YOUR doctor. Make sure your doctor is aware of what is going on. YOUR stress will effect your health.
You can discuss your concerns with your kids. You can also tell them that there has been no definitive diagnosis.
Any life altering diagnosis is difficult to process and some will take longer to go through the phases from denial to acceptance. (denial, anger, bargaining, depression, acceptance. And I am sure there is some bouncing around in that process)
You need to get the support you need so you do not crumble before he does.
Early diagnosis is important because interventions and lifestyle changes can be started earlier, even if medication is not yet indicated. I disagree with your husband's neurologist that "nothing can be done." Believe it or not, one of the most important things a person can do to slow progression and to maintain function is exercise, and your husband could start that even without a firm diagnosis. If you look up "exercise for Parkinson's" there are all kinds of good videos and instructions. Walking and bicycling are excellent. Even if it turns out to not be Parkinson's, we can all use exercise as we age to maintain balance, strength, and flexibility. A referral for physical therapy can also be helpful because a good PT can evaluate a lot and can give your husband specialized exercises he can do on his own. You can do it with him so it becomes a more enjoyable shared activity. Speech therapy and ongoing vocal practice to improve voice quality can also be done even without a Parkinson's diagnosis. My husband's Dr had referred him for speech therapy several times in the years preceding his formal Parkinson's diagnosis. Indeed, the speech therapist was one of the people who suggested to us that my husband might have Parkinson's, just based on his voice and also the therapist's observations of how he moved.
I do have a question. If a lot of your husband's family members have sleep disorder similar to what your husband has, have any of them progressed to Parkinson's? It sounds as though none of them have so far, but have they had neurological work-ups? In your husband's case, it sounds as though there is already more going on than just the sleep disturbance.
I know how devastating this must feel to you, but Parkinson's is not a death sentence by any means. Many people have many years of good functioning before symptoms become sever, and there is a lot that can be done to slow progression and maintain function.
My husband was diagnosed last year with MCI, which he is blissfully in denial of. That hasn't kept me from gathering a support team. I've got my 2 best friends, our PCP and my kids informed and ready to help. Maybe more important, I've got a therapist to talk with and my friends understand why I may not be quite so available to help as I've been in the past.
(((((Hugs))))).