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About desperateinIL

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  1. desperateinIL

    Do you talk about dementia, or is it the elephant in the room?

    It has been a while since I have had time to peruse the forum so am logged on this afternoon and found this discussion very interesting. I too have wondered many times how to have the discussion with my mom's doctor about her hallucinations and cognitive issues / dementia with my mom in the exam room and without making her mad/upset. The hallucinations are very real to her and she gets bent out of shape if you tell her they aren't real so we just play along. Usually she sees children. Fortunately their presence isn't upsetting to her. She is mostly concerned if they had something to eat and how they are going to get home. Last week one morning she told me she and my dad were being held hostage and that my dad was in on it. She was not upset -- just matter-of-fact. Quite often after supper, she says she is ready to go home. When we tell her she is home, she will sometimes sigh and say "I keep forgetting." One time, though, she did tell me that she knew it was her home but that she couldn't make that connection in her brain. That was the first time she ever acknowledged a disconnect. The doctors know she hallucinates but I would like to expand on the discussion with them. I'm just not sure how to do that with my mom in the room. Sometimes I've thought about meeting with the doctor alone for the first 5 minutes to discuss the dementia issues so as to not upset my mom. Not sure if the doc will do that. I also wanted to express my appreciation for those with PWP (such as NN) who are very aware of the changes taking place to them not only physically but also mentally. My mom has never seemed to have any awareness of changes and that has sometimes been very frustrating. If her meds change and she is asked if she feels any different, the response is "I don't know". I asked her recently if she still has her sense of smell (because I heard that is one of the first things to go) and she said "I don't know". So it is refreshing to know that there are some who are very aware of their body and mind.
  2. If a PWP takes only carbidopa/levodopa ER at bedtime and none during the day, will the nighttime dose continue to have some very small effect during the day OR is it that once the medication appears to have worn off after 5-6 hrs, it is completely out of the system?
  3. desperateinIL


    My mom is in the advanced stages of the disease but I started keeping a journal about a year ago primarily to see if there was any connection between her behavior/demeanor and when she took her meds or what she ate. (I've never found a connection but it has been useful nonetheless). Some of the things I track are what she eats, when she eats, when she takes her meds so I know if it was on a full or empty stomach, when she poops, and what her behavior was like throughout the day. I've found that by keeping a journal it helps to keep each day from becoming just a blur.
  4. Just wondering if anyone else's PWP has occasional difficulty hearing. My mom can usually hear fine but sometimes, particularly when she is in her "zombie" state, she will look at me like she can't hear what I am saying. I'm not sure if it is a hearing issue or if she is just having difficulty processing what I am trying to ask or say. If I speak louder and over-enunciate, she usually understands. Wasn't sure if this is common with PD or if it is somehow related to her dementia.
  5. desperateinIL

    effects of sugar

    Is there any research that shows the effects of sugar on PD or how sugar might influence the effectiveness of PD meds? My mom eats a lot of sugar filled snacks. Always has. For her, sugar and particularly chocolate, is a food group For breakfast, she loads up her oatmeal or cereal with sugar. A couple of days ago she heavily coated a piece of toast with cinnamon/sugar. She loves chocolate candy. She has ice cream almost every evening. I don't fuss too much because we try to do everything we can for her to maintain weight (she is now only about 90 lbs). But I've often wondered if the sugar has any effect on her meds or her PD in general.
  6. desperateinIL

    Seems I've developed a rather odd gait

    My mom also walks on the ball of her left foot. Just started last Sept. Her heel just won't go down on the floor even when she is sitting. PT said her Achilles (and hamstrings) are very tight so we try to massage her calves and feet and stretch her heels/Achilles several times a week. It helps some. Also her left foot is very pigeon-toed now and I worry about the strain all of this puts on her knee and hip. My hunch is she needs more Sinemet but that will cause other issues so we just live with the foot as it is. Have thought about asking her doc about a brace of some sort to keep her foot straight but I don't think that will help with walking on her toes.
  7. desperateinIL

    Nursing homes

    Sorry to have veered from the conversation out of the blue. I wrote my response after only reading page 1 of the comments. Didn't notice that a lot more discussion has happened in the past few days. Chalk it up to lack of sleep.....
  8. desperateinIL

    Nursing homes

    Well said genden69. Relying on a nursing home is a personal decision often dictated by our own physical limitations and financial situations. WifeofPWPD -- Before jumping to the nursing home conversation with your husband, there is a long journey down the PD path before you get there. I would recommend the approach New Normal has taken and determine if your house can be made ADA accessible. If not, start thinking about what you will do when it gets more difficult for your loved one to go up and down stairs or get in and out of the shower. Can accommodations be made in your existing home or should you search for a new home? Are there respected individuals or agencies that you can tap into for caregiving when the time comes. In other words, be realistic as the caregiver even if the PWP doesn't want to think about it. My mom is the one with PD. My parents have lived in the same house for over 50 years. I wish they would have moved 10 years ago to a much smaller house but my dad was stubborn and had his head buried in the sand. So I have to live with his decision and figure out how to work with the physical challenges of their house. Now he wishes they were in a smaller house but from my perspective, it is too late. My mom is confused enough in her house of 50+ years -- she will be completely confused if she is moved to a new environment.
  9. desperateinIL

    I'm new to this forum

    Lovingdaughter, I can sympathize with your situation. My mom also has dementia (although not officially diagnosed) with the PD and also continues to lose weight. She is at home so I am able to monitor everything along with her daytime caregivers. She usually eats a good breakfast but lunch and supper are hit or miss. It is a good day when she has one decent meal besides breakfast (and by decent I mean 1/2 of a chicken salad sandwich). Often she will just have a few bites and be done. Thank goodness for supplemental nutritional drinks. In her case there are times she just doesn't seem interested in eating, sometimes she can't open her mouth, and sometimes she is a zombie and can't move. She can usually swallow fine (although it seems to be more difficult when she is tired) so we have not had to resort to Thick-it. During those difficult times, we try to feed her. Sometimes we are successful and there are times it just takes her a little while to get moving and she can eventually finish the meal herself. It isn't unusual for it to take her 1.5 hours to eat. Does the nursing facility give your dad adequate time to eat? Or are they able to offer a shake in the middle of the afternoon? I too have wondered if lack of appetite is somehow related to my mom's medication but have finally decided that it is just the course of the disease (and of the dementia). It is a feeling of helplessness, isn't it. I feel like I am watching her die ounce by ounce. It is good that you are trying to be as involved and hands-on as you can so that you know he is getting the best care. Another alternative to consider is a feeding tube. My mom had one inserted a little over a year ago but it turned out her eating problem at that time was due to too much medication so we had the tube removed after one month. She hated the tube but some people might be ok with it. The pain your dad is experiencing and generally not feeling good is a different situation and is something that should certainly be checked out. Hope you find some answers.
  10. I've noticed that sometimes when people respond to a post, some or all of the previous post is in their response. I can't figure out how to do that. I thought clicking on the "Quote" button would work but it doesn't.
  11. desperateinIL

    What should my level of expectation be?

    I know that she has dementia. I stated that in my original message. Maybe I'm trying to figure out what behaviors are related to PD and which ones are related to the dementia. Or maybe it is too difficult to differentiate between the two. I'll call the help line. Maybe they can provide some information.
  12. My mom is 83. Diagnosed ~13 yrs ago. She is in the advanced stages. Also has dementia and cognitive issues. It occurred to me recently that my struggle with getting her meds right is really a struggle of knowing what my level of expectations should be regarding her behavior and her meds. For example: Sometimes she can feed herself, sometimes she can't. Sometimes she can speak, other times her mouth won't open. Sometimes her feet twist up like pretzels, other times they are fine. Sometimes she is alert and coherent, other times she is a zombie. Sometimes she has energy, other times she can barely get one foot in front of the other (she needs assistance walking at all times). The list goes on and on. I have observed and documented her behavior for months and can't find a pattern as it relates to her meds, food, or amount of sleep. Every day is a roller coaster. So my question is -- at this point and as the disease progresses -- what are realistic expectations? Or maybe put another way, what typically happens physically and mentally as the disease progresses. I really don't know if medication can solve some of the behavior issues or if the disease has progressed too far for meds to help much.
  13. desperateinIL

    Amantadine??? Anyone???

    NN and AB-Normal, Thank you for the laugh-out-loud to the point of tears comments about the big guy in the red suit. Much needed and made my day.
  14. desperateinIL

    Feel like we are going it alone and meds seem wrong

    Welcome to the forum. I joined a few months ago and have found such comfort in knowing I don't have to be alone in this journey. Hopefully you will experience the same. And you will find that the people who are actually living with PD are a great source of information and suggestions. My mom is the one with PD. I am one of her primary caregivers. I can't speak to the Lewy Body and Aricept side concerns but for restless legs, my mom was given ropinirole (Requip) at one time. Ropinirole is a dopamine agonist but it isn't the only one. Every medication has side effects so you have to weigh the good with the bad and you will find that every person responds differently to anti-PD meds. You don't mention whether or not the Sinemet is the immediate-release version of the extended-release (ER) version. If it is immediate-release, you might ask your neurologist about the ER version. It releases more slowly and therefore lasts for a longer period (usually several hours as opposed to just a couple of hours). My mom was on the ER type for about 12 years when it finally got to be too unpredictable as to when it was going to kick in and wear off. But it worked fairly well for all those years and she took it 3 times a day.
  15. desperateinIL

    leg braces?

    Sometimes my mom's legs cramp, her feet get twisted like pretzels while sitting or sometimes one leg sticks straight out when sitting, and one of her feet is very pigeon-toed when walking. Is it ever wise for someone with PD to wear leg braces to keep the feet and legs straighter?