LucasLikesToCruise

Oliver taking his before bedtime nap with grandma while I catch up with all y’all fine folks. 🧐

Oliver taking his mid afternoon nap.

That’s really too bad that they didn’t work for you. After various trials we found that a combination of the regular Sinemet and Sinemet extended release worked well up until about six weeks ago when she started to decline more rapidly. But my mom never had the issues with tremors with her Parkinson’s, her was always issues with her gait and balance.

That’s great advice. I do most of that already. The pills she takes on a schedule are in a daily pill organizer. The bottles they come from are in a basket in the cabinet. All the extras are in sealable container. The ones she takes as needed I keep in a ceramic bowl by the bed. As seen in the pic below. I got tired of having to find my glasses to read the small print on the labels, so I coded the tops of the bottles. M= Morhine O= Oxycodone L= Lorazepam H= Haldol Q= Quetiapine (Seroquel) C= Clonazepam (Klonopin) It just makes it easier for me to grasp what I need when she started to get into one of her altered mental states. And the nurses appreciate it for when they count the narcotics so they know when to reorder them.

Wow, sometimes when I feel so alone in this journey, it always reassuring to hear of others having similar experiences. Thank you for such kind words.

It’s taken a few weeks for me to be able to adjust my way of thinking. The priorities of care once in hospice is different than before. Certain things with her various medical conditions used to concern me a lot more before than they do now. A lot of it is allowing nature to take its course with all the care, comfort and dignity as possible. Sometimes it can be overwhelming and other times it feels a bit of a relief for me.

That’s would be quite frightening. Luckily my moms hallucinations were 95% auditory and about conversations with her sisters or other family she hasn’t seen in a long time. The Sinemet helped slot with her mobility issues, but it was the Nuplazid that did a great job with lessening the duration and frequency of th3 hallucinations.

Andrew, she is still at home. Here we have the option of doing everything at home (depending on the medical diagnosis and care plan). So I am still with her 24/7. The nurses and aids come here to assist. This allows them to have whatever medical supplies and medications here for their need during their visit or for my use to control her when needed. The bedside table looks like opioids dealers dream LOL. The liquid morphine does come in handy. I agree with your assessment about this thread being like a large, slightly dysfunctional family. 🤣

Thanks, I appreciate that. I have been following along with what you have shared about you daughter. There are some amazing treatments now and they can tailor them to the individual persons genes depending on the negative and positive receptors. One thing I learned is that over time the receptors can change. Mom always handles the various chemos really well. They don’t think is the cancer that’s causing her to deteriorate so quickly but rather the rapid progression of the Parkinson’s and the dimentia. im sure your daughter will pull through all her treatments with flying colors.

Thank you. Graham, you and Pauline are one classy act even though you drive on the wrong side of the road. LOL

Thank you. I have sure learned a lot lately, I should be able to fill in for a nurse or a pharmacist bytime this is all over. LOL

Sometimes I forget how kind and friendly total strangers can be. I am really lucky to have stumbled upon this thread the first day Dani started it even though I have never sailed on Royal Caribbean before. I’m sure I’ll give them I try when I’m able to get back to cruising because of all the great people on here..

Thank you for kind words. A couple of months ago when she was still fairly mobile with her walker, I couldn’t keep her in one place when she was hallucinating all the time. It was a challenge for me to take Oliver out for a few minutes. I would have her sit in the recliner and lay it all the way back and put a chair under the leg part so she couldn’t lower it. It seemed cruel yet funny at the same time now that I look back at it. It was the only way to keep her from falling and hurting herself when I had to do something. Hospice even put a pressure mat with alarm on her bed at home so I would be awaken when she would get up during the night. Talk about some sleepless nights with that going off every hour. But, for the past month, she has been a lot let active and will stay in bed when I tell her, so Oliver gets to go on plenty of longer walks now.

Thanks….. I going to try and be more vocal here instead of just a lurker. I do enjoy the entertainment factor of everyone’s lives on here. 😂

Thanks Arzeena I really appreciate the hug. 🙂

I live in Florida and it’s still a bit over a nine hour drive for me to Fort Lauderdale. 😟

Awesome sand sculptures.

Good evening everyone, I’ve been thinking about the best way to respond since Dani first asked about a month ago. I started to and deleted many replies. Then when Sunshine asked I figured I would take a few minutes to myself, which I really haven’t had the past couple of months, and join the conversation again. The past couple of months have been really hectic and kept me quite busy and frustrated. From the end of July to the last part of August I had to call EMS twice due to my moms Parkinson’s Disease Psychosis. For a little old lady (barely 5 foot tall on a good day) with dyskinesia from the Parkinson’s she sure could go from Dr. Jekyll to Mr. Hyde with no warning. During the second time in The hospital she was started on Nuplazid, which is specifically for the hallucinations and delusions of PDP. Since it usually takes four weeks before the effects of Nuplazid are seen, the plan was for her to go to a rehab facility for a few weeks to help build up her strength again as well and work on the doses of her other Parkinson’s meds and Seroquel and Haldol to help with the delusions. She was in a good mood when I took her to the rehab place the first evening, she ate well and settled into bed alright. Well, the next day when I went there, she was a totally different person. I just didn’t know what else to do anymore, I was beyond frustrated and exhausted from taking care of her 24/7 the past few years. I spoke with the case manager there about options. I said I can do almost everything myself with her at home except when she goes bat ***** crazy on me. That’s I hated having to call 911 but didn’t have any other options at the time. She suggested going with a Hospice/Palliative care regimen. With that we would have all the support that I needed to take care of her at home. Especially since the last scans showed that the lastest chemo treatments were no longer keeping the tumors in check. The only other treatments for trip,e negative metastatic breast cancer is very aggressive, and her body wouldn’t tolerate it any longer. So it’s been about two months now since we’ve started hospice, and she is slowly goi g down hill. Seems everyday I notice her a bit slower with thinking, moving and talking. It’s just the nature of the beast with Parkinson’s, dimentia and cancer. So far the nurse comes twice a week and an aid comes twice a week to help with bathing so it doesn’t fall completely on me. There are several others in the office for the case manager or social workers that call and check up on how I am doing with everything. This is the first time in all the years that I have been taking care of her 24/7 that anyone (including family)has asked how I am doing or if there is anything they can do for me. Anyways, I didn’t want to this to be long and drawn out, but sometimes I just can’t shut up, maybe it’s because I only have Oliver to talk to on a daily basis for so long LOL. And I thought that maybe if anyone else is going through that same sort of thing with their fa,I.y members that I could possibly help with any questions. One thing I will say for sure, hospice is nothing like I thought it was. So, this has been my life the last few months. Now that I have a chance to come up for air, I’ll be more likely to join in the regular conversations although I didn’t have any trips planned for obvious reason.😎

I’m a man and I don’t understand 🙂. But then again, I tend not to understand a lot of things that are illogical. Especially when it comes to sentimental attachment to inanimate objects. Just one of those asphergers things I guess. I used to get in trouble a lot when I was little in school and I pointed out when the teacher would say something that wasn’t logical. 🤔🤷🏼‍♂️

Happy Independence Day to all my fellow Americans 🇺🇸🇺🇸🇺🇸🇺🇸

Not every dog. Oliver likes watching the fireworks. We just did our nightly walk and he would stop and watch the fireworks people were setting off around the complex.

It’s weird how it affects dogs differently. My neighbors dogs get freaked out while Oliver will sit there calmly and watch the fireworks. While my old dog would always run and hide in the bathtub whenever he heard a loud sound. Thunder, fireworks, something loud on tv. Straight shot to the bathtub to hide.