As a caregiver, can anyone help me with suggestions on how to handle the dementia aspect of Parkinson's?

Okay, I know I just threw an arrow into a very dense forest without aiming on that question-but here it is-I am an RN; and when my mom was diagnosed with Parkinson's about 6 mos ago, all of a sudden the last year of vague symptoms made sense-the falls, the tremors, the confusion, the handwriting, the shuffling gait, the dragging and "freezing" of her left leg that led to some falls-it was as if a light came on with the words from the neurologist-BUT-never did I expect the dementia would progress so fast. Now, I am dealing on a day-to-day basis with a woman who I formerly knew as my mother who is argumentative, defensive, wanting to argue over everything, and then angry and spiteful if I won't argue-because that means I don't want to talk to her. The meds have helped everything except her mind-matter of fact-the meds seem to make the dementia worse. She blames others for her confusion and gets angry if we don't agree-if we agree we are then played against each sibling as a "I told you I was right" from my mother. If we disagree-well then we are doing all this to deliberately confuse her and make her look a fool. She sneaks things from each of us thinking we aren't looking and lies about it when caught-and has loudly forbidden us to talk about her with each other because we are being mean. She has, in six months, become an adolescent, or worse yet-an angry and spiteful child. It is a catch 22-if we do for her- we are babying her and not allowing her to exercise any independence-if we don't then "we don't love her"...if we ask her about what she wants us to do-then we are insensitive to her needs. I am to the point I do not hold conversations with her anymore-or as minimal as possible because it is always a conversation that will hurt her in one way or another-she will twist it or turn it in spite of what is said-so I try to say nothing. Not a real effective coping mechanism. As a nurse I KNOW this is senile Parkinson's dementia compounded by cortical dementia-as a caregiver I am at a total loss as how to handle my mother.

22 Replies

  • Do you accompany your mother to her neuro appts? Does she see a general neuro or a Movement Disorder Specialist? I am also an RN and boy did I learn a lot about Parkinson's after my husband's diagnosis. I found my husband's care and status improved greatly after switching to the MDS. He was much more in tune with the meds, their side effects and the accompanying mental status changes. Don't be afraid to ask questions. Just because you are a nurse doesn't mean you have to be all-knowing. There are meds like Aricept that can help if indicated. Contact her neuro and have a frank discussion. If you are not happy with the response, look for a new provider. She could have Lewe Body and that requires special management. Good luck. I've been there. Also join a support group. The knowledge you will gain from meetings is invaluable. It will also help reduce your stress as a Caregiver.

  • Thank you-yes I do accompany my mom to her neuro appointments and she just underwent an extensive 6 hour neuropsych eval where I (I stress I-me-not her) came away with many many things she should and could be doing to engage and even enhance her mental status, capacity and functioning. She came away with an impression of "that psychiatrist thinks I am lazy". I thankfully took DPA and medical decision making away and she appointed me as her health surrogate prior to this stage so I am involved with the neuro and I am trying to get her started on Exelon. She does not see a MDS-and I do not know of one-BUT will look in this area. She is a retired nurse also and I am finding her long term memory impedes her present progress because it is not accurate and it is not relevant with current practice or medications. She is hung up on Sinemet and only Sinemet because that is all she knew when she practiced. What I have learned of Sinemet is it is many times becomes the cause of problems as much as it is the solution. I will look for a caregiver support group also-heaven knows I can't tell her! Thank you again

  • I think the important person here is you as it isnt an easy place you are in and sadly it isnt likely to get better. I hope you get good time away from your carer role as well as good support from your local PD organisation if you have one. The national organisations have good web sites too.

    As to your mother's obsession with sinemet, she isn't out of date. It is still the gold standard treatment and nothing has yet been developed that works better. There is a fear of it but it is much easier to tolerate than some other meds and very very few people with Parkinsons can manage their symptoms without it.

    The only thing I remember from working with people with dementia is to try and enter their world rather than pull them back into our world if that makes sense. So i would go along with their reality and avoided disagreement. I know, easier said than done. Good luck.

  • If sinemet helps her symptoms, it's worth a try. You didn't say how old she is, but in my experience (I'm 73 yo, dx 9 yrs, on sinimet 7 and only now getting some dyskensia ) . It might help her mood. It does mine!

    Have an aide bring her to an PD exercise class. This will give you both a break.

    btw, thank you for sharing your observations about dementia. your mom sounds like my sister, 68, who does not have PD, who is the caretaker for my mom 93 who is in a nursing home after a severe stroke in June. I'd love to spend more time with my mom, who knows how much she is aware of what her condition, but they are 1000 miles away and I cannot with my own chronic illness spend much time around my sister. Hard to know what to do long distance.

  • It would benefit you to call NPF helpline an also contact her movement disorder doctor. There maybe some meds that could. Please let's know. This is a very hurtful disease.

  • feel free to message me via this site even if you just want to vent. The progression varies so much from pt to pt. In my husband's case, every time he had a medical incident (DVT w/ PE, fall from ladder, necrotic gallbladder), he regressed rapidly. Best of luck in your search for assistance.

  • I was diagnoised with PD several years ago & hav had it for years, during the last year my condtion became worse tremours intense stiffness and the brain simply not functioning and medication after medication, met with the Neurologist every couple of months help it did not matter what medication or combinations of meds that I took and someone told me to try Coconut oil (pure) brain cleared my hand writing improved 100% I can write again and I can think slowly decreasing the meds and I can ;laugh and sing again. The cure however short will be found in coconut oil.........your mother has nothing to lose PLEASE TRY IT!! IT DID WONDERS FOR ME

  • Hello rackesrn

    My partner has Lewy body disease, which shares many symptoms with Parkinson's.

    We have used homeopathic remedies with much success, especially for the more distressing mental symptoms, including terrifying delusions, which went away fairly quickly (three years ago) and have not returned. The remedies we used were Stramonium and Belladonna - BUT everyone is different (and your mum's delusions are not the same as my partner's were), so do try to find a registered homeopath and at least give it a go. You may well be amazed, and your mum much happier.

    With good wishes


  • I had a patient once with Lewy Body Dementia, (not PD, though) and he was highly combative. He spent 18 months on a neuropsych ward being stabilized. Then he went home, where his caregiver, his spouse, was a tiny woman who could have gotten killed while giving him a shower. Her family begged her to put him in a skilled nursing facility but she refused. And she cared for him until he died. She was safer when he became bed bound but even so, he would strike at the caregivers, who were trained to be on their guard. He had been difficult his whole life.

  • I am not sure if John doesn't have a bit of Loews bodies , He is also very sensitive to certain meds .. he has Parkinson's but gets episodes of confusion . he can be disorientated doesn't know his left from his right etc .

    has some dreadful days when he cannot be understood and sleeps or day dreams all day . but then he will start to. Try and get out of chair , when I asked what h wanted he told m he is going to have a Bath , the other day after a dreadful day I went into the room where he is and he had taken his top half off . getting ready for bed .

    his memory is excellent , he is often reminding me , he always did have an exceptional memory . he sees things or people .

    what sort of things were happening when your husband was diagonesed with alley bodies . john fluctuates so very much .

  • how much and how often did you take these? and how long before you noticed the delusions going away...many thanks

  • What medications does your mother take? A. Movement disorders specialist should be able to help. My sweet younger sister developed many of the psych symptoms you noted when she was prescribed Lexapro.

  • My husband started taking Exelon and it help tremendously. About a year later he started Namenda. It has made a huge difference in his life. As you stated, his meds do make the confusion worse. Also, I agree that a Movement Disorder Specialist is a must. Parkinson's Disease is such a complicated disease with varying symptoms from patient to patient. As I have said many times, the physical disability of Parkinson's is much easier to deal with than the mental. My advice would be to get a referral to a movement disorder specialist immediately. Her medication should be reviewed and possibly reduced and then, since she has already had the neuro exam, the MDS should be able to prescribe Exelon, etc. It is a tough battle and we are here with you. Keep your help up.

  • Both of my parents have Parkinson's . Dad has dementia. Moms is complicated by bipolar disorder. I have found that working with a therapist to help me establish boundaries and reasonable expectations has made this more tolerable. You cannot change them or reason with them, they have lost the ability to reason. Working through your loss, getting a clear set of boundaries for you in managing the situation will give you some peace and power in taking care of your mom. Remember that you are also important. If you go down, their whole world falls apart. Get help and do things that make you happy without feeling selfish or guilty. It is a tricky balance. Take care and God bless you for your sacrifice in caring for your Mom.

  • Wow everyone, thank you so much for the outpouring of support! It appears that I have some homework to do which is a good thing! The battle will be getting my mom on board because, as a good friend of mine says, the only people who like change are wet babies. I will post to follow and see what fhd Exelon does and if she is willing to try the MDS in our region. steps. Thank you and I will keep watching this site as I have learned a lot in the last few days

  • you don't have to be a perfect daughter and/or caregiver--you only have to be 'good enough'.

    We can drive ourselves crazy with our scrupulousness. Just make sure you have time and respite from this.

  • I'm a Parkinson's sufferer and though Dementia hasn't yet entered the equation I fear it will some day. My wife was diagnosed with breast and lymphnode cancer two years ago and had a mastectomy and lymphnode surgery. What the fututre holds for her I don't know but if she were to die before me as I am sure will be the case I would be absolutely lost. Just darkness. I recently started experiencing depression in the mornings just at the thought of all this The exciting research reports in the usual publications just don't excite me any more. They are very interesting and give hope but apply more to my grandchildren. Then again you never know. In the future my two children will be my support but how they will cope I cannot say. Problem is that I am predicted to live well into old age so all this is going to come about sooner or later and drag on forever. You're obviously in a struggle here which I am sure must be absolutely wearing. I hope that some of the replies to your letter will provide you with some real practical help.

  • I am also a caregiver of someone suffering from Parkinson's related dementia. My dad's neurologists believe he has Lewy Body Dementia. It is really challenging and I totally understand your frustration. Here is what has worked for us--

    1. First I totally agree with Ryan12 above. Coconut oil has made a great difference in my dad's mental state. While it hasn't cured the dementia, it certainly has tamed it. I say this because if he misses a "dose", his aggressiveness, irrationality, and argumentiveness comes back immediately. We have found that he needs 4 tbls/day, given at the same times each day. As long as we keep him stable on his coconut oil, the "lion" of the dementia stays in its cage. You do need to ease into this amount, however, as initially it can cause diarrhea and a detox.

    2. Secondly, do check into the possibility of Lewy Body Dementia. I have read that people with LBD cannot tolerate sinemet. That certainly was the case with my dad. He nearly went mad when he was on it. When he came off, his hallucinations, incoherence and personality disorders disappeared.

    3. As for dealing with the dementia when its "talking to you" -- it helps me to just remember its the dementia talking and not my dad. There's no logic to it at all. Basically we do whatever works at the moment. Sometimes it works to distract him. Other times ignoring it altogether works. (This really is a good strategy. Often if I ignore the craziness, my dad will eventually tire of the behavior or thought. Arguing only feeds the flame.) Interestingly, he does calm down when he watches old movies and listens to classical music -- things he can connect with from happy memories of the past. Above all, maintaining an environment of quiet, peace and routine is very important. God bless you, you and your mom are in my prayers.

  • My husband has what the neuropsychiatrist called cognitive impairment. Sometimes it is worse than others and then he becomes argumentative, calls me a bully when I disagree with him and loses his train of thought mid sentence. It appears from talking to people that some of this may be caused by toxins from the liver getting into the brain, the toxins being the result of the bladder not emptying properly because of weak muscles or constipation (same cause). Recently the latter has become a real problem. He takes lactulose twice daily and has also tried movicol and fibre gel. Now he is on sennokot so we will see if that helps. The lactulose and Fibre gel don't seem to be any use. As for the bladder, he tried self-catheterising but that gave him an infection so it was a constant cycle of antibiotics. As the part emptied bladder didn't seem to cause him problems he stopped that. Now I am wondering if this is contributing to his confusion but the option he would be offered would be a permanent pubic catheter.

  • My Grandmother had dementia, my step-mother had it, and now my step-father has it. It is a cruel disease. One of the biggest clues is they hide thing and think someone stole it from them. Each one of them had one person (family member) that they don't trust and accuse of doing things to them. They may think you are poisoning them and not swallow their pills or refuse to take them. They can hurt you.

  • At last another caregiver pf a parent with PD thats a nurse. I am a nurse taking care of my dad with advanced PD and PD related dementia and all i can say is patients are easier. I feel for you!

  • Memory: Ask the neurologist anout Namenda with my dad they started him on it then added aricept now they have increased both as far as they can. These meds wont improve the stage they are at with dementia but they can slow the progression some. Dont argue with her dont try to reason with her.

    Im sorry it is so hard I have dropped my career and became 24/7 caregiver alone to dad after my mom past away 2 yrs. ago. ITS TOTALLY DIFFERENT THAN TAKING CARE OF PATIENTS. THERE IS NO SHIFT CHANGE HERE TO REPORT OFF TO!!

    Maybe some of this can help

    FALLS: If she is mobile and to keep her mobile exercise if even recumbent floor bike to strengthen legs and arms

    one to set in front of her chair or on a table.

    RESEARCH LSVT BIG therapy FOR PD this took dad from frequent falls and having trouble getting out of bed using wc and walker to no falls and a cane for awhile.

    water exercise pool helped alot also.

    also check out UStep walkers with laser light. THIS IS NOW HELPING GREATLY.

    Definetely need a Neurologist Specializing in Movement Disorders.

    Contact The Parkinsons Association if she doesn't. have one they can recommend one for her.

    As far as emotional and behavioral issues avoiding conflict this is the hardest to deal with just having a conversation or caring for brings up the circle conversation that goes no place.

    They are our parents and like children and we cant handle like children but we cannot reason with try to explain things. With dad all empathy has been replaced with anger and frustration.

    If hospitalised get an order from her doctor to give her meds.

    The hour before hour after law can really play havoc. on PD.

    I hope some of this helps.

You may also like...