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Dreading Sundown…What helps you manage?
Caregivers: Dementia | Last Active: Jul 2 1:56pm | Replies (38)Comment receiving replies
It's amazing that you're just beginning to get worn out. You are a trooper.
I have been worn out and worn down for over a year, but I just pick myself back up and start a new day--hoping that it will be better but prepared that it might be worse than the day before. Caregiving might do me in, but at least I will die happy, knowing that I did my best. And as we keep reminding each other (and quoting Karla), with God's help: "We can do it!"
P.S. George's sundowning behavior has gone through different phrases during this past year. At first, I gave him a melatonin around 8 p.m. He would go to bed around 9 p.m. and sleep for two hours, wake up every hour on the hour after that, and then stay up for a three-hour interval every night. While he was awake, he got in and out of bed up to 16 times during that interval.
Now, on most nights, he refuses to come to bed because he's either afraid that his back will hurt too much, or that he won't be able to get back out of bed; so he insists on sleeping in his recliner, which is in another room. I still give him a melatonin at 4 p.m. and another one around 8 p.m. He falls asleep in his chair at 9 p.m., sometimes earlier. Around 3 a.m., he gets up and starts wandering around and hollering. I give him a drop of THC/CBD, which gets him to sleep for two hours. When he wakes up again, I give him a gummy and he'll sleep until 8 a.m.
One manifestation of George's anxiety is that he asks me all day long and at night right before bedtime: "Where's my wallet? Where are my keys? Where's my cell phone?" I got him a pouch for him to keep all those things together in one place, and I tell him to keep the pouch on top of his desk in his office. So, when he asks for one of those items, I tell him that it's in his pouch. I thought that would simplify our life; but now, he'll ask me where's his pouch, and I tell him that it's on top of his desk. Then he'll ask where's his desk, and I tell him that it's in his office. Then he'll say: "I don't know where that is." Did God choreagraph variations of a new dance for dementia partners? Is there humor in this somewhere? I must be missing it because the repetition drives me crazy--then I have to snap out of it.
Replies to "@labrown It's amazing that you're just beginning to get worn out. You are a trooper. I..."
CAVEAT: You have to be careful about mixing CBD with prescription medications. The reaction varies from individual to individual. Before I started giving George CBD, I researched drug interactions, and read that mixing drugs or mixing drugs with CBD, especially in the case elderly patients, can lead to breathing issues, coma, and death.
I also made a list of all of George's prescription medications and consulted with a geriatric psychiatrist AND an MD who was an international cannabis expert. They were worth the out-of-pocket expenses and very reassuring.
@georgescraftjr Wow, it looks like you're lucky if you get 6 hours sleep in between that 9 p.m. and 3 am. if you're lucky. That's impossible for anyone. I know it would be for me. Do you have any in-home help at night for him, so you can sleep? Yes, "we can do" it, I know the Lord doesn't want us to keep sacrificing our own health. My husband went to the primary care, and she told him (even with the MCI and memory loss), that he was her role model. Nothing was wrong with him. Meanwhile, me, his caregiver is battling, all kinds of GI issues, inflammation, blood pressure and cholesterol, kidney issues, etc. I'm realizing he could outlive me. The stress and anxiety of all this takes its toll and with no sleep. I just don't know how you do it. Also, is there something stronger you can give George to keep it down - in and out of bed 16 times in one night, is exhausting? Also, my husband has a backpack that he keeps right next to where he sleeps. I like that fanny pack idea Judy had.
Best, Karla
@georgescraftjr I a little about me before I reply I'm 46 married with one daughter who is 12 years old. I'm an only Child and my mom is suffering from severe dementia and cognitive decline that is happening rapidly. about a year and a half ago My wife and I decided to sell our house in NJ and move into my parents house in DE to Help them. They have a large house with a mother daughter set up as my Dad's mom my grandmother had been living with them until she passed form covid 4-5 years ago. Dad is an esophageal cancer survivor has kidney disease diabetes, survived a widow maker heart attack and has a pace maker a watchman device and has had to TAVER Aortic Valve replacement s the most recent replacement only 3 months or so ago. He was my moms primary care giver for many years but his own failing health he just was unable to keep up with it any longer. Their financial situation is not great they made some poor financial decisions and now rely on my dads small pension and what he and my mom get from social security to live on and often are now living pay check to pay check. My wife and I have had to cover some outstanding debts as well as help with the bills from most months. Helping this much financially was not initially part of the deal we had discussed with my parents prior to making the move, so the benefit of saving money by not having to pay for a mortgage in exchange for helping take care of my parents is not really happening. This was not the reason moved to help them we have moved anyway as I was not going to eave my parents to fend for themselves with their declining health but it certainly adds to the stress my wife and I feel. My mother has had severe psychological issues most of her adult life stemming from childhood sexual abuse she endured. She even developed dissociative/multiple personality disorder as a result and was heavily medicate for 40 plus years on psychotropic and anti depressant medication. about 8-9 years ago she almost dies and had a combination complete mental breakdown that was cause by polypharmacy toxicity from the 40+ years of taking the above mentioned medications. She definitely y was not the same person after that and suffered lasting brain damage that we believe has led to or at least is a major contributing factor to her sever dementia and its rapid progression.
Now having given that background regarding the Sundowning and repetitive questioning due to anxiety I feel your pain. My mother like clockwork every day at about 4pm sundown's severely constantly asking who is coming over today that she needs to get dressed to go out at least 50 to 60 times by the time 9pm roles around. Drives my father and I absolutely crazy. She will also often try to go and change her clothes 8-10 times an evening often trying to put on a shirt top as pants and vice versa or layers upon layers of clothes. We have actually placed a combination lock on the door to their bedroom and lock it during the day so she can no longer wander into the bedroom to constantly change clothes. She would also go into the fridge and take out salad dressing and start drinking it from the bottle so we had to lock the fridge and freezer as well for her own safety. She also suffers from orthostatic hypotension where her blood pressure will drop suddenly when standing or walking so she is a major fall risk and she suffers from osteoporosis as a lot of women her age do even though she is only 73 years old. She is a t great risk for breaking a bone and has fallen 3 times already this week. She cannot really speak full sentences or thoughts anymore and her responses to others when asked questions appear to be complete non sensical or make no sense to the question that was asked which makes us wonder if she understood what was asked or if she is trying to answer but her brain says it something completely different. My opinion is she is just complete in her own reality and every once in a little while she enters the reality of the real word for a fleeting moment.
We have her under the care of the Swank memory center in Wilmington DE out patient wise and we are trying to manage her symptoms via mediation but honestly at this point my mom is gone she is not even a a shadow of herself any longer and we keep asking the doctors to prescribe as we would call it an off switch. The doctors really need to just at this point give us medication that will sedate her because the life is currently living is not one she would want for herself nor would she want to be causing my dad myself and my wife and daughter so much stress.
Mom doesn't need to feel the anxiety she is feeling that makes her so nervous to keep asking the same questions over and over and over and over and inevitably dad and I do lose our patience and snap at her sometimes she just looks hurt and wounded that we would speak to her in a mean tone of voice then dad and I feel so guilty but we are human beings too who are flawed and can only take so much until we crack at times.
The state of government support for aging adults in the us is horrible unless you have wealth to pay for it privately you are pretty much on your own.
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@georgescraftjr
Hi, just a pouch idea:
What if his pouch was a belly pack, and he just wears it around during the day with his items inside? That way, he always has it with him.