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  #16  
Old 03-23-2014, 09:43 PM
Veganmamma Veganmamma is offline
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I am going through this with my Mom right now, but we are not as far advanced yet. We are walking a tight rope though.
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Old 03-24-2014, 02:58 AM
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My own grandfather had Parkinson's and it eventually took him from us, much younger than we'd have expected.

DH and I cared for my MIL (81) in our home for almost a year before it became apparent that we could simply not do it anymore.

When we brought her to live with us from FL, she was somewhat challenging and had some issues (like some incontinence and a strange aversion to bathing), but we made it work. She was able to get up and down with minimal help with her walker and was pretty self-sufficient. She has her idiosyncrasies and all, but it was ok.

A nasty UTI (that she fought us tooth and nail to even seek treatment for) knocked her down pretty hard and she was hospitalized for almost a week. She went through rehab after that hospitalization and seemed to be doing better, so we brought her home in Dec. At least she was here for the kids' Christmas. Christmas day was the longest she'd stayed out of her bed in months.

Unfortunately, in those last months, it became clear that dementia had been setting in and seemed to be a rather aggressive type. Not only was it a huge challenge dealing with her physically (now completely incontinent, and likes to hide her poop), but she started becoming downright mean and emotionally abusive. If I am being completely honest, I think we could have dealt with everything else had she been one of those "pleasantly confused" little old ladies, but she just wasn't. Despite having nurse's aides in morning and evening for a few hours (who she was also incredibly and embarrassingly mean to), we were still exhausted all.the.time. It also became very clear that it was affecting many of our children (some she was very mean to, also). When she entered the hospital again (ICU for uncontrolled a-fib and cardiomyopathy), we knew we needed to find another way for us all.

She's now been a resident in a local nursing home since January. It was not easy at first, not at all. She was tearful and mean to everyone (but had been doing the same thing here at home) even to the point where she would cuss the nurses (again, did the same at home to us and the nurse's aides) and even slapped a nurse... wow that was a fun phone call! They eventually found the right blend of medications and a better routine for her and she's actually doing so much better now. She is content. She is calmer. She is more at peace than I've seen her in a long time.

When her name finally came up for a private room this week, and they moved her... she didn't even make it 2 days and she was giving them absolute hell, so they moved her back. Even though she will never actually admit that she even likes her roommate (if nothing else, MIL is a stubborn old woman!), she was happy in THAT room and was no longer interested in being alone. That's fine. If she is happy, we are happy. She has a routine, a rhythm. Heck, she is bathed twice a week there and she actually lets them!

If you need to chat, I am happy to listen. Since my hubby works full time as a teacher, I have been MIL's primary caretaker since we brought her home. She still tells everyone that I'm in charge when we go to see her. She's funny. And PS: We have 8 kids, 6 are still at home full time (16, 14, 13, 7, 5, and 2) so our hands are very full, too.

Hang in there, it is a tough road!
~~~~~~~
**eh self-sufficient isn't totally accurate, but she could at least get into the bathroom at least 50% of the time and could feed herself and manage her meds with minimal direction. She was still totally dependent on me for all meals, about half her bathroom needs, bedding changes and needed help with her ADLs.
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  #18  
Old 03-24-2014, 12:06 PM
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  #19  
Old 03-25-2014, 08:24 PM
Veggiewitch Veggiewitch is offline
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Thank you all so much.

This is my first day with 4-hours of respite care from HomeCare, so I'm going to do my best to reply. I knew CDN was the right place to come and give my heart a place to release, rest and recharge.

Quote:
Originally Posted by thesillyjessy View Post
Pm me if you need to. My dad had a very fast moving disease (the human form of mad cow) and I took care of him during the day until he passed. It was only a few months but alot of work, stress and sorrow. We had a few funny times mixed in with the others. I know all about the needing to change diapers and dementia. <3 It's really hard, but my brothers and sisters always say how glad they are I was there for him, and I am glad too.
I'm so sorry, Mama. I'm also relieved I'm here for my Mom, too. It's the funny times and good days that make it. Thank you so much. I may just take you up on the PM'ing.

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Originally Posted by Jae View Post
My father in law has Parkinson's. It sucks. And the meds make him hallucinate, which I'm sure is only adding to your mom's mental turmoil. He also sugar craves because of the medicine, and can't often control his body, which leads to falls, spills, and bathroom accidents... All of these things, with the fact that you have to lock up sweets, makes him feel like a child. It's so humbling, and difficult to work through. I'm so sorry that you are having to live this right now. Have you found any online support groups for caretakers of parents with Parkinson's (or dementia?). I've found specific support groups to be exponentially valuable (e.g. My dyspraxia support group is much more encouraging *for me* than my generic special needs support group! even though I love both).

Tons of hugs. I'm glad you're getting some respite care.
Hallucinate? Absolutely. My mom sees fairies and "little people" all the time. It's ok for us, because my girls and I believe in those things, too. My Mom has also seen a big, black dog with red eyes out the window. We redirect her when she sees him, and joke that it's a Hell Hound (we watch Supernatural here, so we try to make it kind of light for her ). She's not frightened of the dog at all, she just seems to observe him sometimes.

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Originally Posted by Veganmamma View Post
I am going through this with my Mom right now, but we are not as far advanced yet. We are walking a tight rope though.
I'm so sorry. We are vegan, and feed a plant-based diet to my Mom as well. I've started giving my Mom dairy (yogurt and cottage cheese) for morning meals and snacks to to arrest any muscle loss and boost her personal protein intake easily. I'd rather not give her adult formula (Boost, Ensure, etc.), because I'm happy to get more non-vegan foods (anything but meat) and offer more snacks and such to keep her from wasting away.

Quote:
Originally Posted by yeswehave8 View Post
A nasty UTI (that she fought us tooth and nail to even seek treatment for) knocked her down pretty hard and she was hospitalized for almost a week.

If you need to chat, I am happy to listen. Since my hubby works full time as a teacher, I have been MIL's primary caretaker since we brought her home. She still tells everyone that I'm in charge when we go to see her. She's funny. And PS: We have 8 kids, 6 are still at home full time (16, 14, 13, 7, 5, and 2) so our hands are very full, too.

Hang in there, it is a tough road!
~~~~~~~
**eh self-sufficient isn't totally accurate, but she could at least get into the bathroom at least 50% of the time and could feed herself and manage her meds with minimal direction. She was still totally dependent on me for all meals, about half her bathroom needs, bedding changes and needed help with her ADLs.
THIS! I noticed this past week that my Mom must have a UTI, and that was causing even more confusion for her. As a result, she was trying NOT to go to the toilet, and that was impacting her bowel movements, too. Since we've had her on a course of antibiotics, she appears to be feeling "better" and her urine has returned to a normal odour. I know it's TMI, but scent is a good tip. I feel bad, though, because I had initially attributed the smell to her PD pills. In hindsight I probably should have had her on anti-b's earlier.
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  #20  
Old 03-25-2014, 08:57 PM
jujusmommy jujusmommy is offline
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Although my grandmother didn't have anything like you are experiencing, she was on medicines for many conditions and she did have hallucinations and was seeing things at one point. (Yelling at the nurses to get the dogs out of her room). She was in a nursing home and deteriorating fast. For almost two years she was like this, going down hill, until one day my aunt asked for all her medications and had them checked. My grandmother was being OVERDOSED! It was causing hallucinations and her health was deteriorating because of it! She was slowly weaned off of some of the medicines which were counteracting and she became grandma again. I highly encourage people to make the doctors double check the meds. My grandmother came back to us for another few years. She left the nursing home and went to live with my grandpa until her death. To have her back was such a blessing. I'm not saying this is the case, but looking back at the many years we lost out with grandma, I wouldn't want anyone to lose that time with their loved one.
  #21  
Old 03-26-2014, 07:24 PM
Veggiewitch Veggiewitch is offline
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Originally Posted by jujusmommy View Post
Although my grandmother didn't have anything like you are experiencing, she was on medicines for many conditions and she did have hallucinations and was seeing things at one point. (Yelling at the nurses to get the dogs out of her room). She was in a nursing home and deteriorating fast. For almost two years she was like this, going down hill, until one day my aunt asked for all her medications and had them checked. My grandmother was being OVERDOSED! It was causing hallucinations and her health was deteriorating because of it! She was slowly weaned off of some of the medicines which were counteracting and she became grandma again. I highly encourage people to make the doctors double check the meds. My grandmother came back to us for another few years. She left the nursing home and went to live with my grandpa until her death. To have her back was such a blessing. I'm not saying this is the case, but looking back at the many years we lost out with grandma, I wouldn't want anyone to lose that time with their loved one.
Wow! Your poor gran!

I'm so glad you guys got her meds sorted. I'm sure that happens way more often than people think, so it's absolutely a good place to start.

My mom is currently on a low dose (7 pills per day - 2 am, 2 mid, 2 supper, 1 bed) of her Parkinson's meds, and as long as her tremors don't emerge, I have no plans to allow an increase. The only other med she's given is medical marihuana in pill-form at bed time to help her sleep and pre-emptively address the dyskinesia/cramping she'd get upon waking. She's fully addicted to levadopa (for PD) now, and that brings a dozen or so side-effects with it, dyskinesia being one of them.

My mom was diagnosed with Dementia with Lewy Bodies and Parkinsonisms 4 years ago. Based on some literature, the lifespan after diagnosis is 5-7 years.

I'll do everything I can to keep her comfortable and home with us for as long as we're all able.

Thank you so much, Mamas! I appreciate you all more than words can properly convey.
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  #22  
Old 03-26-2014, 08:10 PM
aschrimp aschrimp is offline
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we took care of my FIL in our home while he was dying of brain cancer. It is so very hard. We got to the point where we simply couldn't keep him home safely - he would get out of bed and fall, and would refuse to stay in bed where he was safe. At the very end, we had to move him to a care facility. That was really hard, too, because he wanted to be home.
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  #23  
Old 03-27-2014, 12:37 AM
Veggiewitch Veggiewitch is offline
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Originally Posted by aschrimp View Post
we took care of my FIL in our home while he was dying of brain cancer. It is so very hard. We got to the point where we simply couldn't keep him home safely - he would get out of bed and fall, and would refuse to stay in bed where he was safe. At the very end, we had to move him to a care facility. That was really hard, too, because he wanted to be home.
Awwwwe. I'm so sorry, Mama.

This is our end of the road, too.

We know that will likely come sooner or later, especially if my mom begins to show signs of aggression. We've been lucky so far (touch wood), but I suspect it's probably not far off, since sometimes she will look at me with I can only best describe as contempt, and aggression is often a part of late-stage dementia. It's a blessing she has trouble stringing words together when those moments happen, though.

At any rate, being part of the HomeCare system here will help with placement once the time comes if/when to place her in a home, which is also a small comfort.
~~~~~~~
...she will look at me with *what* I can only best describe as contempt...

syntax error/fingers going quicker than my brain
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Last edited by Veggiewitch; 03-27-2014 at 12:39 AM. Reason: Automerged Doublepost by CDN
  #24  
Old 03-27-2014, 01:13 AM
Veganmamma Veganmamma is offline
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Quote:
Originally Posted by Oakanwillow View Post


I'm so sorry. We are vegan, and feed a plant-based diet to my Mom as well. I've started giving my Mom dairy (yogurt and cottage cheese) for morning meals and snacks to to arrest any muscle loss and boost her personal protein intake easily. I'd rather not give her adult formula (Boost, Ensure, etc.), because I'm happy to get more non-vegan foods (anything but meat) and offer more snacks and such to keep her from wasting away.

If your Mom was vegan before her dementia you might want to consider hemp protein shakes. When a close vegan friend was in hospital, they wanted him to take ensure and he wouldn't so they went out and got him help protein powder and made him amazing smoothie/shakes with it added. It did the trick.
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Old 03-27-2014, 02:19 AM
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aggression - contempt - utis - lived all of it
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  #26  
Old 03-27-2014, 03:18 AM
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Quote:
Originally Posted by Oakanwillow View Post
Awwwwe. I'm so sorry, Mama.

This is our end of the road, too.

We know that will likely come sooner or later, especially if my mom begins to show signs of aggression. We've been lucky so far (touch wood), but I suspect it's probably not far off, since sometimes she will look at me with I can only best describe as contempt, and aggression is often a part of late-stage dementia. It's a blessing she has trouble stringing words together when those moments happen, though.

At any rate, being part of the HomeCare system here will help with placement once the time comes if/when to place her in a home, which is also a small comfort.
~~~~~~~
...she will look at me with *what* I can only best describe as contempt...

syntax error/fingers going quicker than my brain
Dh's dad was constantly hearing music in his head. It was from the brain tumors. But he was *hearing* it, and it drove him absolutely bug-nuts. DH got home from work one day, and he was in a stand off, in the spare bedroom, cane in hand, preparing to do some SERIOUS damage to my sewing machine. He was *convinced* that he had located the source of the music, and was ready to send it to kingdom come.

It took my dh a good hour, he had to pull the entire sewing machine out, and demonstrate that it did, in fact, sew, for FIL to back off and lower his cane. And then...we hid it. Because it was not a cheap sewing machine, and we didn't want him going after it some other day.
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  #27  
Old 03-27-2014, 03:29 PM
Veggiewitch Veggiewitch is offline
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Quote:
Originally Posted by Veganmamma View Post
If your Mom was vegan before her dementia you might want to consider hemp protein shakes. When a close vegan friend was in hospital, they wanted him to take ensure and he wouldn't so they went out and got him help protein powder and made him amazing smoothie/shakes with it added. It did the trick.
We've been vegan (semi-vegetarian for 5 years prior to) for 3 years, but my mom has only been eating vegan since living with us. It's also better for a person living with PD (Parkinson's) to avoid animal proteins, because of the effect the medication (levadopa) has on the brain.

I'd love to give her hemp protein smoothies, but it's kind of a challenge to get my mom to drink her water these days. She's happy to eat the yogurt and cottage cheese, though, so we'll be content with that. She's so easily confused by things like her cups of water, it's nice to see her get excited over yogurt.

Quote:
Originally Posted by kitty1163 View Post
aggression - contempt - utis - lived all of it
I'd really like to know what it is about dementia, the meds, and the condition itself that predisposes sufferers to these nasty UTI's. Is there a connection to the meds? Is it just simply an overall reluctance to drink fluids? It's very curious to me.

Quote:
Originally Posted by aschrimp View Post
Dh's dad was constantly hearing music in his head. It was from the brain tumors. But he was *hearing* it, and it drove him absolutely bug-nuts. DH got home from work one day, and he was in a stand off, in the spare bedroom, cane in hand, preparing to do some SERIOUS damage to my sewing machine. He was *convinced* that he had located the source of the music, and was ready to send it to kingdom come.

It took my dh a good hour, he had to pull the entire sewing machine out, and demonstrate that it did, in fact, sew, for FIL to back off and lower his cane. And then...we hid it. Because it was not a cheap sewing machine, and we didn't want him going after it some other day.
Holy guacamole!

I really hope my mom doesn't get like that. She's still mobile, albeit slowly, without a walker or a cane, but I could see her potentially waving a cane at us here.
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  #28  
Old 03-27-2014, 05:01 PM
Lint Licker Lint Licker is offline
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We just lost my husbands grandpa to dementia. Its a terrible nasty disease
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Old 03-27-2014, 05:04 PM
Veggiewitch Veggiewitch is offline
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We just lost my husbands grandpa to dementia. Its a terrible nasty disease
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  #30  
Old 05-14-2014, 07:04 PM
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I'm so sorry I can't imagine. How are you all doing?
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