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Clueless in TN

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Everything posted by Clueless in TN

  1. No Sleep For The Weary

    My dad takes trazodone and melatonin at bedtime, but it's hit or miss if they work. Many nights he's up at least half the night. Now that his dementia is worse he lives at a memory care facility - we tried taking care of him but weren't able to do it & work too. Having PD with no dementia, might be possible to get a night's sleep but with the dementia, forget it!

    Big Mac, At 74 my dad was diagnosed with PD. A year later, after Mom died, I stepped into the caregiving role. Looking back I can see that he had started to show signs of dementia. Now he's been diagnosed with Lewy Body dementia. His neurologist explained that dosing the Carb-Levo is a balancing act - more of it will help with movement but will also possibly increase the hallucinations. Backing off of it can help keep hallucinations at bay but you sacrifice movement. So to answer your question, yes it could be your new normal. I don't think you can treat both problems completely; it's either or. Fortunately dad doesn't have much trouble with movement so the focus is on his mental & behavioral issues. Tammy
  3. Helping my Dad Transition to Assisted Living

    Hi Brillo, I agree with Twitch, it would be a good idea to keep them occupied while their belongings are being moved over. My dad (who's in the same shape as yours) realized that he didn't have other options after mom died, so he went willingly. His dementia wasn't very evident then, but as it got worse he started having a hard time. Plus we lived in a different state. Now that we have moved him down here he's in memory care & is more engaged than when he was at home. Good luck!
  4. Linda Where Are You?

    We need a 'dislike' button for posts (not you Linda!). Admin, are you listening?
  5. Professional caregivers?

    NN, I commend you for thinking about this subject now, before you really need it. I don't know where you're at in AZ - is there a supply of home health workers (either through an agency or individuals you could hire on your own? When DH & I were caring for my dad, we used an agency. I know they didn't have the staff to be able to provide round the clock care (we live in a small town). Plus, he would need an LPN in a.m. & at dinner time to check blood sugar and give insulin; HHAs can't do that in our state. I did the math & that would have been more expensive than the nursing home he's in now! Barring any problems like dementia, I think assisted living would be the way to go. It's hard to see that money fly out the window, but it gets rid of the problem of finding someone to stuff around the house, yard, etc.. Any kids who can help out?
  6. Now have a Chair Lift

    Dad has one & he really liked it (although he wasn't at the point where he was having difficulty standing up), but in the last couple of months he's been refusing to sit in it. He finally admitted that he couldn't figure out how to work the controls any more. My grandma (who didn't have PD) used one & it was really a help when she had trouble getting up.
  7. My typical day as a Caregiver

    Miracleseeker, that's hard to say. I know i would definitely have urged them to plan for the time when they need help & can't do it on their own. They had the savings. I tried to get them to move down here in 2014, but they both said no, we couldn't possibly do that. After nagging & suggesting for a while, we gave up. Then mom dies & here we are. At the risk of being crucified, I will say that I never had any plans to be a hands-on caregiver for either parent. Growing up, I had a difficult relationship with them. Not saying that I'm without fault, no way. But after Dad's suicide attempt, he couldn't go back to assisted living & there was nowhere that would take him. So we stepped up to the plate. I'm not happy with the situation & some days I feel like i'm going down for the third time, but whatever.
  8. My typical day as a Caregiver

    Maral, my comment about head in the sand wasn't to you, but to any who think they don't need to have Plan B. We all want to live for a long time in our own house & then one day just die in our sleep. News flash- most of us don't get our wish. I'm just tired & ranting. This weekend I was looking over some old PCP visit notes in my dad's electronic medical record. I noticed there was a diagnosis of 'memory loss' 3 years ago- about the time he first saw a neurologist & Parkinson's was suspected. Do you THINK either of my parents said anything about it in that time? No. Head in the sand was like their religion. They just figured they would live out there in the country with no family nearby. I just don't get it. Oh, I have found that it helps to get up in the night to have dad go to the toilet. That way his depend isn't overflowing in the morning. (That is if he stays in bed)
  9. My typical day as a Caregiver

    Learn from our posts? My advice would be: 'Don't stick your head in the sand. Plan for the worst & hope for the best!'
  10. My typical day as a Caregiver

    Maral, I'm in the same boat as you. Dad gets up and wanders around in his room; if he has to go to the bathroom, he doesn't put another one on. He might pull it back up (even if it's wet) or he might take it off. He doesn't have the dexterity to use a urinal. And he too thinks that he has to remove pants, socks, etc. But he tries to leave his shoes on. Go figure. I make up his bed like genden does: waterproof mattress pad, a couple Chux-type pads, sheet, then a washable bed pad on top of that. Luckily the mattress stays dry so far. I had the pharmacist review his meds; no reason for his (recently) increased confusion & being up more at night. His neurologist recently said that he thinks this is actually Lewy body dementia, rather than Parkinson's. Who knows? It seems to me that it hardly matters by now - the end result is the same & it's too late for any proactive measures. When I first brought him down here I had these hopes of him getting a little bit better, or at least not any worse at least for a while. Haha! Now it seems like he's going down hill & picking up speed.
  11. Caregivers, PWPs, please give me your thoughts on this. You may remember me, I don't post a lot. My dad has Parkinson's, 76 y.o., and has recently moved to be near us. He is living at an assisted living center by us (we live in a small townhome & aren't able to move to a different home where he could live with us). Recently he was diagnosed with dementia, after having hallucinations for some time. At this point, he knows the things he sees aren't real, but he says that it's very hard to convince himself of it. In the past when he's asked me to take a look at something, I have told him 'Dad, there's nothing there. I don't see it.' (Usually it's bugs, ants, or something moving.) I asked him if it made him mad that I said I didn't see anything & he said no, but he was upset that it was happening. So, there are a couple of things I'd like to do now that will make things easier in the future if his condition gets worse (stuff that isn't covered by the durable POA & healthcare POA currently in place. My question is- when talking about things like that, do you reference someone's dementia, or politely dance around it? Usually I'm pretty straightforward about things, but no one wants to think about loosing their mental capabilities. He's pretty educated about Parkinson's, knows what can happen, and has had some memory loss up to now, but I don't know how to behave with this. Still have that 'oh no!' feeling & don't know what to do. Guess I'll just go to bed, & carry on this conversation tomorrow! Maybe I'll wake up, like Dorothy, & it will be a dream. (yeah, right...)
  12. Dehydration

    Maral, I'm really glad that your husband is doing better and that you'll have the home health staff coming in for a while. It is a big reassurance to have the nurse come just to check vitals & know that he's doing ok. Dehydration can come on fast. Dad was dehydrated before his last hospitalization & I had no idea; no changes in urine color, etc. Thanks for mentioning Propel. Dad's wants something different to drink, besides juices all the time, doesn't do caffeine. I just have water or green tea, so never think of those sports drinks. I think I'll pick some up for him.
  13. picky senior eater. HELP!

    This may not be the right forum for this problem. My dad came home from skilled nursing a week ago. He was there for a couple weeks, after being in the hospital one week for yet another UTI. Since then, I've noticed that his dementia has increased. That's not as big a problem as the mealtime battles. When I was growing up, he was never a picky eater. Now, oh my gosh! Meals are 'too bland', or he just doesn't like things, like leaving behind all the carrots in the soup bowl (this was Chunky Chicken & vegetables, nothing weird). The drama has gotten to the point where he's teary if he doesn't like it. No I don't yell at him! It's not that it's too chewy, tough, dry, etc. that would make something hard to eat. I cut things up in tiny pieces & make it easy. I can't just give him whatever, he's a diabetic. I'm not much of a 'home cooking' type of cook - don't like it, never learned it & can't make gravy to save my life. I swear I'm not serving him crap, we eat it too & DH says it's good. (We're not honeymooners; after 30 years, he'd tell me if he didn't like it!) I don't remember what my mom cooked - we haven't lived near them since 1990. With the caregiving & trying to do my job too, I'm ready to say screw the healthy stuff, just fix a separate meal of easy box stuff. When I ask him what he wants, he can't come up with any suggestions. This is starting to turn in to a deal-breaker. I'm so stressed out, at yesterday's doctor's appointment I found out that the rash I have is shingles! I swear I want to run away & take my husband with me.
  14. picky senior eater. HELP!

    Dave, he's a type 2, but since his last hospitalizations starting in December his blood sugar has been pretty out of control (low). The doctors finally stopped his insulins & the metformin he was taking for a while. Diet & his loss of about 40 pounds (which he really needed) have made his blood sugars really good - doctor wants them around 150. Starting today, his doctor told me to just test once a day instead of the 4X that they were doing at the SNF. So we'll see what it looks like tomorrow morning. = I am being selfish, wanting it to work. Everything's soooo much easier if I don't have to test & give injections before meals; cooking, toileting, getting everything to the table. And needing injections makes the chance of getting any respite care more expensive (if DH & I ever get to go away for a weekend). Well, little miss sunshine is going to go lay down. The guys are watching election stuff. Thanks to all of you for your ideas & lending an ear!
  15. picky senior eater. HELP!

    The food to me seemed to be like what I think of as hospital food - mashed potatoes, gravy, some kind of chopped meat, veggies, etc. We do sit together at the table, and when I finish I still hang around at the table. As a last resort I have plenty of Glucerna "Bottoms up, Dad!"
  16. picky senior eater. HELP!

    There may not be any answers to this, but this is one of those times I need to vent!
  17. My friend went into Hospice

    Quietstill, I'm so sorry about your friend! I can only imagine how you feel. You did the right thing to pass along hospice information. It's a shame when families feel that they have 'failed' a loved one when they elect it. Everyone's different but I'd feel better if it was my dad, knowing that he wasn't in pain. I would want it for myself if I was in that person's shoes. Hopefully now at your visits you & your friend can just enjoy each other's company.
  18. New here, Questions about grandmother with Parkinson

    Robin, I'm really glad that your grandmother is better. Watch the infections, especially urinary tract ones. They will definitely cause problems & hallucinations. My dad (76 y.o.) just had a couple episodes recently.
  19. Singing the blues

    Quietstill, I had to laugh about this. Last week I started work an hour early so I could go to the gym at the end of the day. (Dad, the PWP, is at skilled nursing getting daily PT/OT after being in the hospital for a couple weeks.) DH was working that day, so I went on to the gym before he was due to get off work. When I came out of the gym, DH is there in his car giving me what for because I didn't leave a note. (He got off work early; who knew?) My position was "Why should I leave a note when no one is supposed to be there to read it?" Some days, you just can't win.
  20. Disappointed

    Golden, for the sake of your niece & her family, I sure hope they're on board with your sister's plan! My parents' plan was to age in place. They lived out in the sticks & wouldn't even consider selling the house & moving near us. We even came up with a plan where they could buy a little townhouse nearby, we would live in it & they could live in our house in town which was perfect: one level, handicapped accessible bathroom, etc. (that's why we moved there, it was going to be our final house). No way, they wouldn't hear of it. So when Mom died (she was the caregiver), Dad had to move to an ALC. That didn't work for him, so here we are now - living with him. I was angry about the situation for a while. "Why didn't they have plan B?" Of course, the load has lightened while he's been in SNF for PT & OT after being in the hospital for a while. Maral, I haven't posted in some time because things get busy (dad needs a bit of help, but he's up from 6 am til about 10 pm). It seems like posting is in spurts on this board but everyone is so helpful.
  21. increasing sinemet dosage & frequency

    Please give me advice, or tell me if I'm over thinking this. My dad just saw his new neuro today & he increased his sinemet from 1 three times a day, to 1.5 four times a day. He didn't give me instructions about the frequency, & the pharmacist said to spread it out over Dad's waking hours, not a 24-hour day. I have figured it out & will give it at 7 am, 12 noon, 5 pm & 10 pm. Now- how quickly to ramp it up from 1 pill to 1.5 pills. I could check with the doctor Monday, but want to start this tomorrow. I've heard people say it was hard to increase their dose & don't want to cause problems for dad. Thanks!
  22. increasing sinemet dosage & frequency

    Thanks Adam, that makes sense. I didn't want do do it too slowly either. We have a follow up appointment in 5 weeks, so that will get him up to the dose prescribed within one week, then have four weeks to see how it helps him. I appreciate this group & your responses!
  23. increasing sinemet dosage & frequency

    Musician- sorry, i left that off. It's 25/100. And he changed it because Dad's been having a lot of stiffness & difficulty moving, especially in the night (he has to get up to go to the bathroom a couple times a night. This was the first appt with this doctor because he moved to TN in June. He hasn't seen a neuro since 3/2015 (he was scheduled in September but was in the hospital at that time. When you live in Podunkville, the hospitals don't have neurologists on staff. Plus, he was in a geriatric psych unit.) I just don't want to cause him to have _more_ hallucinations, etc.
  24. This may be old news for everyone out there. And I don't know why I was surprised, I work with Medicare claims on a daily basis & already know they can be a pain. Since I already have been named as my dad's power of attorney & healthcare power of attorney, I thought I would provide Social Security & Medicare with that info in case I need to contact them about something in the future. Then I find out that they won't just accept the paperwork drawn up by the attorney. Nooooo... they have to have their own paperwork filled out. And medicare says to allow 50 work days for it to be processed. So, if there's a possibility that you may need to talk with them someday on behalf of the PWP, take care of it now.
  25. I recieved an interesting messege this afternoon

    Michael, at the risk of being black-balled, I think they are 'ab-normal', not you! Wonder if they think you don't have anything on under that yellow shirt? (rolling eyes)