Mom's head picking... OMG. Any suggestions?
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.
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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.
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.
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.
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?
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.
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.
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.
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
My 95 yr old Dad decided to do that on his own 3 yrs ago.
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...
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.
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
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.
How’s it going? You do have a challenge on your hands. I hope that you and your mom find relief soon.
Your situation is so difficult, I wish you well.
R27