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She has Parkinson's, wheelchair bound (can barely get up/off potty & bed from Wheelchair), a bit of dementia, bone on bone knees, Incontinence, COPD among other things... The top of her head has bald places, sores, scabs and her hand STAYS in her head, all the time, even during sleep! I know all about OCD, Excoriation Disorder, fidget sleeves and fidget toys, anxiety meds, short nails, hats, scarfs, gloves. We've tried it all except wigs. ha We all just ignore it now, although it's very annoying. Nothing has helped. She's on soooo many meds and I want her off them, or some. Long term use of these meds is probably why she has Parkinson's to begin with! Cymbalta, Gabapentin, Hydroxyzine and now Sinemet (just to name a few. ridiculous.) God, I wish I knew then (when she was in charge of her life and meds), what I know now. I would have intervened then, years ago. All the Drs do is prescribe meds or change meds at each visit and long term use is not studied. I take nothing. Nothing. She been on some of them for over 15+ yrs. When I talk to doc about weaning her, the symptoms are horrible. She is always in pain and I don't want to cause her more. She's 82, lives with me, daily sitters and does have moments of laughter and happiness when the grands are around. They give us joy. I wish I truly, truly knew what would be helpful and beneficial to my sweet mom and how to do it to help her (take away some of the meds). I peruse the internet and try to educate myself and fail miserably. Seems like the medical community only wants to medicate. I know the time is coming where that's all we'll have is to medicate her to "keep her comfortable". We're almost there. God, I hate this. The suffering is so difficult. Old age is not for sissies. I wish I didn't have to LOAD the pill containers every week. SUCKS. Sucks for her. Sucks for us. Just Sucks. If anyone out there has any suggestions as how to stop (or maybe not at all), cut down any of these meds, let me know of your experience(s). Of course I wouldn't do anything w/o Doc Advice. I think everyday people that live this life are much more astute than the docs giving out prescrips like candy. It's a paycheck to them. This is my LIFE.

It looks to me like you may have exhausted all the possible physical sources of the problem. I worked a little, long ago, with developmentally disabled and autistic children with analogous problems. In those situations, it was clear the issues were behavioral, not physical. Often they were maintained by the attention people were giving the children because of these behaviors, even though the attention was not of the positive kind. What sometimes (not always) worked was never paying attention to the chidren when they were exhibiting these behaviors, while giving them lots of positive attention when they were showing appropriate behaviors. You mentioned, I believe, that at least for the moment, you were simply ignoring your mother's scalp-picking. This may work out better than everything else you have tried. The critical thing is to NEVER give this behavior any attention, which may result initially in her doing it more, rather than less. Hang in there, and make sure everyone around your mother does the same. If you occasionally pay attention, and attention is important in maintaining the behavior, it will become stronger, rather than weaker. I may be way off in this assessment, but ignoring the behavior is probably worth a try. Good luck!
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If none of the recommended medications work, this is a last desperation suggestion. Tie her wrists together with enough slack that she can reach everything with one hand except her head. It might stop the automatic habit. Wrist to foot might work too. But watch to check that she doesn’t do anything dangerous.
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MomCaregiver56 - My mom had "the itch" on her back (not her head). It was a problem for years, and nothing we tried worked. When hospice took her off of Eliquis, the itching amazingly enough stopped within a couple of days. The hospice people told us that the Eliquis itch is fairly common, and that switching to another blood thinner often ends the itch.
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It was Chicago Med...there's a clip but not with the patient, but with an explanation at NBC.com. It was aired on 11/16/18 it seems and it was called Charles Phantom Itch Experiment. The clip explains the rationale...who knows...maybe it will help answer/resolve things...
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I think I watched the Chicago Med episode I had recorded...maybe you can google it...And just to say although I know people aren't supposed to use the ER when in hospice, i.e. you're supposed to call them...I'm not sure of the rules but would think you could go back in the program or maybe they have one called Palliative Care??
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This is a tic or habit that she has developed. I would ask the physician and pharmacy team for a evaluation of all medications. I wonder if perhaps you could somehow keep gloves on her so that she can't pick at her scalp.
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My mom is now on morphine and while she doesn't pick at her scalp, it does make her itch. I give her Benadryl twice daily, and that has been helpful.
Your situation is so difficult, I wish you well.
R27
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MomCaregiver,

How’s it going? You do have a challenge on your hands. I hope that you and your mom find relief soon.
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Mom Caregiver,
Can you read up on Dr. Peter Breggin, M.D. ?
"Peter Roger Breggin is an American psychiatrist and critic of shock treatment and psychiatric medication. In his books, he advocates replacing psychiatry's use of drugs and electroconvulsive therapy with psychotherapy, education, empathy, love, and broader human services. Breggin is the author of many books critical of psychiatric medication, including Toxic Psychiatry, Talking Back to Prozac and Talking Back to Ritalin."
Starting there may help. Maybe he refers people to resources.
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Ask her pharmacist to review her medications for side effects you mentioned and drug interactions. She/he may have more success in helping with adjusting medications - by talking to the doctors.
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I’ve just read through and see you’ve gotten a lot of good advice. My dad is also a scalp picker, he only does it in his sleep. He had a huge mistake of a skin cancer procedure a few years ago, egged on by a overzealous dermatologist. The recovery, like all of his recoveries, was awful, and it’s never really healed as it should. This despite repeated visits to the cursed dermatologist for further help with it. (Can you tell I’m begging my dad to break up with this clown?!) So we’re left with blood on his pillowcase and an angry looking scalp. And we’ve tried everything as you have, but my dad isn’t concerned much, so I've tried to back off and just hope one day it heals. Not an answer I know.
And I definitely feel your pain on the number of meds. My dad is on a truly ridiculous number of meds, but every time I’ve attempted to get any removed the docs treat me like I’m some kind of terrible person. And my dad is from the generation who believes every word from a doctors mouth is sacred and to be obeyed without question.
Sorry to drone on, did want to say your mother is blessed to have you in her corner
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Consider pulling in hospice.
Also go stream Chicago Med...I think that was the one...they had a patient that had dug to the skull bone. Not remembering the details of what they called it but of course it being TV they did have a nice resolution with a treatment involving the patient looking into a mirror...tricking the brain...it was a psychiatrist that figured it out...
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MomCaregiver56 Nov 15, 2019
Yes, I agree on Hospice. We've had hospice months ago then ER - hospital and rehab stopped that. We're on Home Health now that is ending soon.
Hospice was wonderful. She's not improved on HH. They did have her taking a few steps yesterday but it's been a gradual decline. They agree.
Thanks greatly for your reply... i'll check out Chicago Med episode regarding the head picking.
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Your mom might be experiencing really itchy scalp. I’m 70, 71 in a couple of weeks, and I noticed my scalp has been itching really bad for the last year or so, another result of aging (so tired of hearing that) as told by my doctor. I tried all the over the counter shampoos for scalp itching with not much success, so I checked with my dermatologist who prescribed the Ketoconazole Shampoo 2%, lather, leave it on for five minutes before rinsing and to use it on Monday, Wednesday and Friday. Well the itching has not stopped 100% but it has decreased the itching a lot. I know from experience that the more you scratch, the more it itches. Maybe this regime would give your mom some relief if you decide to try it. Good luck!
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MomCaregiver56 Nov 15, 2019
ok... i'll give it a shot. we're tried many many shampoos, even steroid prescrip shampoo. nothing has helped. she's on an anti-anxiety med, Hydroxyzine. 2 as needed does helps maybe a small bit.  I swear it drives us all crazy. the sores are bleeding! she can't stop. she's wants us all just to shut up about it.
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I would discuss with your mom about it first then tell the Dr's you want your mom to discontinue all meds except pain.

My 95 yr old Dad decided to do that on his own 3 yrs ago.
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My dad does the picking too. I don't think he's aware that he even does it. He has a scab on his chest that won't, can't heal because he sits there picking at it. We've tried gloves and mittens but he always manages to take them off.

I thought I heard you say your mom only has tremors in one leg. My dad only has tremors in his left arm (diagnosed Parkinson's almost 3 years ago). Neurologist thought he may of had a stroke along the way, hence the crazy left arm. Makes sense. CAT scans along the way were inconclusive. Couldn't find anything. But kept with the Parkinson's diagnosis because, well, it made sense, it fit, so off to the next patient they went!...

So now, on to new non-VA neurologist, doc kept saying, this is the weirdest Parkinson's I've ever seen. Referred us to a movement disorder specialist -specialized neurology doctor.

After some questions, some movement commands, evaluating how my dad and his body responded, she declared my dad didn't have Parkinson's but in fact had Neurological CBD- Cordicobasal Degeneration.

Corticobasal degeneration (CBD) is a rare progressive neurological disorder characterized by cell loss and deterioration of specific areas of the brain. Affected individuals often initially experience motor abnormalities in one limb that eventually spreads to affect all the arms and legs.

Doc said this was worse than Parkinson's but will have the same outcome. So we've weaned him off of his carbidopa/levodopa as it's of no use and he seems to be more lucid. His body is rigid and his movement is terrible. But thats to be expected. Maybe your mom has been misdiagnosed as well?

Good luck. Everyone on this forum knows what you are going through and can sympathize. Its rough, this whole getting old thing.

Aloha
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MomCaregiver56 Nov 15, 2019
Thank you for your reply Hawaii - I've thought about being misdiagnosed bc I do not trust the medical community totally. She wasn't diagnosed until age 80. She's 82 1/2 now. Besides the left leg tremor, she has several major markers: can't smell anything, tremor, balance, rigidity, Bradykinesia, blank stare, among others. When she was walking with a rollator, she'd completely stop, stare, hand in her head (picking) and just FREEZE... for the longest time. Now, she's wheelchair bound but does the same. Her poor brain is dying.  In rehab, her hands starting shaking as well but not now. She's only been on the carba/dopa for approx. 3 mos now. So maybe it's helping?? They never even put her on it when she was diagnosed and I didn't know any better (to ask) at the time. I'm going to talk to pharmacist about all the meds. I've talked to Doc.  I just wish she wasn't in such a "zombie state" all the time.  I question everything. I wish someone had the answers. One day atta time...
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Recently I noticed that I have been scratching my head - a LOT. Well, I already use a really good dandruff shampoo, Nizoral, which has antifungal properties.

I have Colloidal Silver Gel & Colloidal Silver Nasal Spray and even have it in a sprayer bottle. I thought, what the heck?! and tried spraying it on my head and working it into the hair/scalp. The itching - and my scratching - all came to a halt! And I mean right away.

The Nizoral is aka Ketoconazole: Ketoconazole is used to treat skin infections such as athlete's foot, jock itch, ringworm, and certain kinds of dandruff. It was prescribed for my DH because of his itching on his body, mainly his shoulders and arms.

You would have to check with her physician re: ketoconazole/Nizoral shampoo (the shampoo is OTC @Walmart) - I buy the Colloidal Silver @Amazon but it too is available @Walmart. The Colloidal Silver has stopped my itching where I have hair. PM me if you want more information, but I have tried to type the basic info.
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MomCaregiver56 Nov 15, 2019
Thank you Raylin - these items are on my list. I do use a colloidal gel for her skin tears. I have a question: do you use the gel for your scalp or the nasal spray for the scalp (I'm assuming it has the same active ingredient)? Which is in the sprayer bottle? I guess I could use the gel on her scalp. I so appreciate your help. This site has been very useful!
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I'd explore Hospice and/or Palliative care programs. Hopefully, they could streamline the medications. Some meds cause itching. I did discover that my LO really did benefit from Cymbalta. She went off once and the result was NOT good. She soon returned to crying, worrying, obsessing, etc. She returned back to Cymbalta and became content again. Perhaps, the doctors can figure out just what she needs.

Or, on the other hand, you might explore some specialists who might have better luck treating her conditions. Maybe, her doctors are not prepared to treat a difficult case like hers.
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MomCaregiver,

Yes, the falls are terrifying. I have been through the ER trips too. Staples in her head, bruises, etc.

My mom also has severe edema. She wears the compression stockings. Those help. She was told to take fluid pills but she won’t because she felt she would have to use the bathroom more.

Things got so crazy with mom. She wasn’t always agreeable. She is a perfectionist. She was always that way. She started criticizing me horribly and pitted my brothers against me.

I sacrificed my whole life for her. My brothers never helped in any way. I burned out and finally told mom to go live with my brother and SIL. Unfortunately, we no longer have contact. It’s complicated. Caregiving ruined our relationship.

It’s so hard caring for them, emotionally and physically. I understand.
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MomCaregiver56 Nov 15, 2019
NeedHelp, so sorry to hear about the distance between you and your mom now. We never know how these things will turn out. I hope time will heal old wounds. Life is just too short. I hope you are able to move through and move on to happiness!
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Okay, I want to mention something else too. In regards to weakness, Parkinson’s patients can run low blood pressure. My mom was taking blood pressure meds. When she developed Parkinson’s she was still taking her blood pressure meds. Her blood pressure dropped too low and she had to be taken off of her BP meds.

Her pressure dropped so low that I had to take her to the ER. The hospitalist was the one who told me this information and immediately took her off the BP meds.

My mom was not overweight at all. In fact, she’s thin. Yet, it seems to me that doctors keep people on blood pressure meds for a long time. My mom has had the ‘white coat’ blood pressure issue. The primary doctor years ago put her on the meds and kept her on them. This is common.

Of course, BP meds are important for those who consistently run high BP. That was not my mom. She was not at risk for a stroke.

I don’t know a lot of people who have been told they no longer have to take BP meds long after their pressure has stabilized, due to the meds yes, but also a lifestyle change such as diet and exercise.

I find it interesting that mom’s neurologist did not remove her BP meds or even discuss it with us. Does your mom take her blood pressure on a regular basis at home?

It’s so sad that lifestyle changes occur with the elderly. My mom was so healthy when she was younger. Never saw a doctor. Only went to the hospital to deliver babies. Very easy pregnancies and deliveries. Walked often. Very active. Then dreadful diseases like Parkinson’s changes their world, right?

Her mom did not have Parkinson’s and remained active until she died at 85 years old, heart just stopped. No cane, still did her own housework, still drove, did her own grocery shopping, still cooked, still crocheted and knitted, still lived fairly well. We should all be so lucky, right?
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MomCaregiver56 Nov 13, 2019
Yes, we should all be so lucky! What a way to pass. I pray for that, when the time comes. I don't want her to fall again. She's done that a thousand times. Once ER visit and stitches. She's very unsteady in standing up and moving from wheelchair to potty, bed, liftchair. We are right there with her but she could still fall. She is overweight about 20 lbs prob. Her blood pressure is a bit high. She was on Hyzaar and Coreg but now just Coreg twice a day. I'm sure the sedentary life and meds are keeping the weight on. She is eating less so I'm hoping she'll lose it slowly. I know as she declines, it will come off. Among all the meds I mentioned in the 1st post, she's on a blood thinner for clots, Eliquis. Continuous clot in one leg and 1 in lower lung. The swelling in leg has gone down tremendously. ER Doc called the clots "chronic" so no telling how long she's had them but the blood thinner seems to be working. We're keeping a watch (pulmonary doc) on the lung too. I know she could easily get more with just laying around like she does now; although, home health PC & OC keeping her busy at this time. I can't imagine that her life will continue another year. You just never know though. Parkinson's really is horrible. She's had a wonderful life put it's not so wonderful now. Pain sucks. I can't thank you enough for your reply!
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Forgot to mention that mom uses Scalpicin for her scalp issues. You can get at the drugstore.
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MomCaregiver56 Nov 13, 2019
ok... put it on the grocery list but I really really doubt ANYTHING will work with her head picking. It's totally off the chart!
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I totally agree that you should not stop or even "wean" her off meds on your own...consult with the MD first. Has she been examined by a dermatologist for the scalp itching, scabing? I know this is another MD to get involved with, but since they specialize in diagnosing skin conditions, they may be able to help her.
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MomCaregiver56 Nov 12, 2019
Oh absolutely. She’s been to dermatologist several times. Really, no help.
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I cared for my mom in my home for nearly 15 years. Years before that in her home as well.

Mom has Parkinson’s. The Sinemet is for the tremors. Sometimes a combination of drugs are used. Parkinson’s effects everyone differently. My mother only took Sinemet. At one time she took another drug that was later discontinued.

Don’t discontinue any drugs suddenly or without contacting your doctor, or another doctor (second opinion). I totally agree with NY about discussing drugs with the pharmacist. I have done that many times throughout the years about meds.

My mom has the severe mobility issues too. The bone on bone knees too. She uses a walker.

Home health and rehab at the nursing home helped. I do think most Parkinson’s patients if they live to a very advanced age will end up in a wheelchair. It becomes too big of a struggle for them. My mom is 94. Her brother with Parkinson’s disease died at 96 and did end up in a wheelchair.

Best of luck to you and your family.
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MomCaregiver56 Nov 12, 2019
Thank you so much for replying. Mom was diagnosed only 2 1/2 yrs ago with Parkinson’s. She’s 82. Bf that it was fibromyalgia and idiopathic neuropathy. I think it was Parkinson’s all along so the meds were wrong? Maybe not . Sinemet only 3 mos ago in rehab. We’ve had hospice, ER, rehab now home health. I just don’t know what to do. I bet it’s the Parkinson’s decline though. Masked face, tremor only left leg for about 2-3 yrs., rigidity, bradykenisia, all getting worse. Zombie like sometimes. Heartbreaking. Her real self comes through at times. She’s still in there somewhere.
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My aunt (93 dementia) has hypertension ( 3 tabs), two memory pills, an antidepressant, thyroid tablet, baby aspirin, multi vit, vit d, probiotic, miralax, eye drops. We cut everything else out. She was on thyroid, bp meds and aricept when I started with her. Ophthalmologist added the refresh drops and multi vit which contains eye vitamins. The probiotic and miralax has kept her steady after a life time of nausea and constipation. We stopped the Wellbutrin at one time and could tell she did better on it.
She sees a geriatric primary once a year. Has her annual flu shot. Has seasonal allergies. Claritin manages that. She is fairly stable. Uses a cane and has therapy several times a year. She’s fallen once in five or six years that I know of. She is very careful. Still makes her coffee each morning ( decaf). Opens her garage for her aide and let’s her dog out.
She started the picking a few years ago. We started CBD oil about a year ago after a diff aunt had great success with it for Parkinson’s. (That Aunt was no longer speaking. Talks now).
Aunt stopped picking. I thought (prayed) it was for good but occasionally I will see she has a place on her ear lobe she’s been scratching. It was awful at one time. The CBD oil helps me with anxiety and back pain. And it’s great for sleep. I am a huge believer in vit D. I did have her on B vit and fish oil and vit e and c but we cut those out. Depend on the multi for those now. I did try to manage her diet better at one time. I gave that up. She wore me down. She will ask “Does it matter that I feel great”. Yes. It does. We have a pill talk every so often. We will talk about what each one is for and if she wants to keep taking them. She does so on we go. Try the CBD oil. Ask around. You will find one that you trust. My cousin is now taking a full spectrum one and likes it better. I haven’t tried that but I truly believe it helped with the picking.
Oh and she uses Trader Joe Tea Tree shampoo and bath products. Make sure her shampoo has no laurel in it. She uses a allergy clear detergent. Amlactin body lotion. She will ask me about a new med every now and then when she sees them on tv. They are usually memory pills. I think she would like to try them but I don’t go there.
My aunt who has Parkinson’s also has dementia and has been on hospice for over two years. She doesn’t pick. She fell in July and has gone down hill but is slowly getting better. She hasn’t taken any scrips except the one Parkinson one for a few years now. She does take herbs and eats very clean. Uses aromatherapy and music. All her vitals are great. My cousin says CBD gave her back her mom. Try the geriatric primary. We no longer see the neurologist but have kept on with the aricept and namenda because she seems to do well on it. But who knows? So hard to tell.
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MomCaregiver56 Nov 12, 2019
Yes we use CBD at night drops under tongue and sometimes in the morning. I’ve even thought about getting pot and trying brownies or something. I’m sure that would be better than all the crap she’s on !
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Switch her to a geriatrician. A doctor who specializes in geriatrics is your best bet to get her off some of the meds and to lower the doses on others. In my experience, internists and neurologists are some of the worst offenders of medicating their patients to keep them going. I mean, someone has to pay for the Porsche, right???!!!

Do not tell the doctor that her pain goal is zero. That is, in my opinion, unrealistic for the old and the frail until they reach the point of DNR/comfort care. It's also one of the reasons so many people are addicted to narcotics, constipated because of narcotics, depressed because their pain is chronic, and dying of narcotics overdoses because their bodies have gotten used to the narcotics. It's a vicious cycle.

A geriatrician will work with you to go through all of her meds and make changes that are meaningful rather than knee-jerk. A good geriatrician or family practitioner may also have a geriatric nurse practitioner on staff.

Also, ask your pharmacist for a consult about all her meds. They are an underused wealth of information. That's what I did for my MIL when her meds were causing more problems than they were helping. I too wished I had stepped in sooner. MIL's neurologist was a big part of the problem of overprescribing. He was treating her with pills while she was going downhill fast during the final six months of her life. He knew the pills weren't going to cure her but rather just treat her symptoms. The side effects were awful. BTW, this neurologist drives a Jaguar sports car that I'd never seen before so it must be super expensive.
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Countrymouse Nov 12, 2019
Excellent idea. And if it's a geriatrician with a special interest in Parkinson's who happens to be best buddies with a pharmacologist, so much the better. I really, really hope this bears fruit for the OP - the bind she and her mother are in is pure torture.
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