Venting Again(1)

FloydSnax

My first post here a year ago or so, was titled I Can't Give Up. Though I knew there might come a day where I would have to. I think that day is coming sooner than I want. I got used to...or I got better dealing with the dusk hour mental breakdowns my mom would have. Mostly because they only happened with a few hours left in the day. And from the moment we would wake to this 4pm everyday...we would laugh, hang out, dare I say, almost normal (though it wasn't, but it wasn't bad). But within the last couple of weeks, there's been 4 all-day breakdowns and I find it hard to re-direct her manic behavior. And it's starting to make me manic! Every 5 minutes, "Take me home!" when this has been her home for 20 plus years. "Wait till Dave gets here, he'll take me" I'm Dave. And I've been trying to logically explain when I know that's the wrong approach because nothing in her world is logical. Now it's "Then I'm just going to walk there myself " but I've got the exit to where she can't escape... in her pajamas. Tonight, she was adamant in leaving. She's just getting worse and worse and I don't like what its been doing to me. Her telling me that I don't care about her makes me flip because I do everything for her. I've sacrificed some good years for this same ultimate outcome. Even now, in my head I can see her so alone at some run down Hospital and it rips me apart to where I can never make that call for an ambulance. Even if she's not "in there" anymore, she's still my mom. Where do I draw that line? She doesn't know who I am. But I know who she is. If someone would have told me this is where I would be, I'd have run far away. Like my siblings have. There is no *$%& happy ending in this tale. For all of  us.

Rick4407

Hello Floyd.  Have you talked to her neurologist?  It sounds like what many call sundowning.  The neurologist started my DW on Seroquel about four years ago.  A small dose and working up to more gradually over the years.  It has been a lifesaver for us.  Talk to your neurologist.  Good luck, Rick

harshedbuzz

Floyd-

I am so sorry you find yourself in this unhappy situation.

Alas, the end of this tale is always the same-- dementia wins. Unless your mom dies of something else first, dementia will kill her. Your decision comes down to deciding if dementia is going to take you down with it as well. For my family, this was what drove the decision to seek professional care for dad-- his care was putting mom's health and life at risk. Dementia had robbed her of her life partner and financial comfort, it had slowly away taken away her friends, her beloved winters in Florida, important self-care and time to enjoy her hobbies. I supported placement all along, but at the intersection of her being too spent to attend to her own medical needs and her inability to match a professional team in a quality MCF I bullied her into placing him asap. 

FTR, PWD tend to go to MCFs or perhaps skilled nursing if their needs are that great or if they are on Medicaid and their state doesn't pay for MC-- not hospitals. If you tour and make a good choice, you should be able to find a well-run and pleasant setting for her with dementia-trained, experienced and well-rested staff. At a certain point, you are not able to deliver a level of care that approaches that given in a good MCF. If you have unlimited assets, you could replicate a care team at home, but it wouldn't provide the same level of structure and dementia-informed activities for her. Dad's MCF was able to provide better care for dad than mom.

I feel I need to comment on something I read in another thread. Does mom's neurologist know about your Zzzzquil chaser? I know it's OTC and marketed as safe, but the diphenhydramine is not a great choice for the elderly and especially for those with dementia. There seems to be an association between this medication and dementia risk. 

If your mom was a woman worthy of the title mom, she would not in her right mind have wanted you to give up your life to care for her.

HB

Ed1937

Floyd, it's time for you to tell your siblings that you can't do it any longer. If they don't want to step up, it sounds like it's time for placement. Of course you'll want to talk to her doctor to see if he will prescribe something to help with sundowning.

mommyandme (m&m)

I’m so sorry for these struggles.  My mom and I were where you are now.  It was horrible to say the least.  Because of my moms mobility issues she could never get far.  But I too was like “how in the hell can she criticize me, demean me, scold me, etc..Im doing everything for HER and about HER while giving up so much of me”.  It’s so cruel, this disease.  Even though I still have mom at home, doesn’t mean I don’t think about the what ifs.  We’ve gotten through those really really bad times and I kind of see the other side of now.  But tomorrow is another crappy day with this fiasco so who knows.  

Only you know what you can or can’t do and what you can live with, you’ve got to care for yourself too.  You’ve got to save yourself! I’m so sorry these are your days right now. So heartbreaking! 

Iris L.

FloydSnax wrote:

. She's just getting worse and worse and I don't like what its been doing to me.

 Her telling me that I don't care about her makes me flip because I do everything for her. I've sacrificed some good years for this same ultimate outcome. 

. There is no  happy ending in this tale. 

Getting worse is the nature of dementia.  You have to accept that this is how it is.  Then you can go to the next step in the progression of care.  

IMO, one can be happy in knowing that one has done his or her best in the challenge where we all know the ultimate ending.  Dementia can take down one, don't let it take down two. 

Iris

FloydSnax

Rick

No! I've never heard of this medication, and I've asked her doctor for something...anything for this sundown lunacy. But thank you very much, I will get this done. Thank you very much. This site has helped me more than I can state. 

FloydSnax

Harshed

I can't even remember the last time we've seen a neurologist. I think because my mom is 90, they're just maintaining her health instead of trying to improve her health. I know she's on Medicade because we don't have the ace$$ for the best care facilities but I haven't even looked into anything, and I know I should. Long ago. I left that part to my sibs and I know they haven't looked into anything either. This is a *$%& hell in all aspects. And its one she doesn't deserve. At least she's not aware of that. Thanks for your response because I really do learn from each one.

FloydSnax

Ed

About a year ago, I made out this nice schedule where my 3 sibs would watch over my mom once a month on weekends. Only 48 hours. I was really shocked when they rejected my offer. It has seriously changed our relationship. Because it was for me, more than for my mom. 

M1

Floyd, just chiming in/piling on to what HB said about the Zzquil, not a good choice-- antihistamines in general, especially old ones like diphenhydramine, have a lot of central nervous system effects and should be avoided.  Seroquel would be a much better choice.

FloydSnax

M&M

Thank you for your kind words. You've always been kind in your responses and the only one who takes me to the brink of tears. I always say to myself...If only I can get through this horrible night, tomorrow will be better and it always is. Every day is a learning experience, especially when I come on this site. Thanks to people like you.  

FloydSnax

Iris

darn*. So true. And I know it. I know that's what is headed my way. I'm still fighting it. I don't want to let it get me. Gotta make sure there's something left of me. Thank you

FloydSnax

M1

Like I said. A couple doctors said it shouldn't be a problem but reading your response makes me wanna do another of my little tests. Just to compare and figure things out. Starting tonight, at least for a week or two, I will refrain from giving her the Zquil and write down its effects or lack of them, I guess. Again, like I said, I'm no doctor but I sure as hell am doing more than her doctors are. And when I do my little tests, I always bring in my data on her appointment dates and they never really look at them. But thanks.  

Ed1937

FloydSnax wrote:

M1

I'm no doctor 

M1 is! Maybe you need to consider a new one??

Anon1001

Hello,

I am sorry to hear that you are having such a hard time.  My mom used to have tantrums and fits when the sun went down, during her later stages of dementia, and what used to pacify her somewhat was a small, salty junk food treat of some type, like fast food french fries, potato chips, or instant cup o noodles.  I am not sure exactly why it calmed her down, but her sundowning episodes were reduced quite a lot after I started giving this to her, and would come back with greater frequency when I paused giving it to her.  It did not raise her blood pressure or cholesterol at all, really.  She was seen by her primary care physician every three months, and had her blood work done by this physician every three months, and her blood test results were always good.  

With the holiday season in full swing, hopefully you will be able to take some time off for yourself to rest and recuperate somewhat, it seems as if you are experiencing quite a bit of fatigue.  

harshedbuzz

FloydSnax wrote:

Like I said. A couple doctors said it shouldn't be a problem but reading your response makes me wanna do another of my little tests. Just to compare and figure things out. Starting tonight, at least for a week or two, I will refrain from giving her the Zquil and write down its effects or lack of them, I guess. Again, like I said, I'm no doctor but I sure as hell am doing more than her doctors are. And when I do my little tests, I always bring in my data on her appointment dates and they never really look at them. But thanks.  

I'm not entirely certain that all of the effects of ZZquil are entirely reversible or that they would clear her system quickly enough to do this as an experiment.

FloydSnax

Ed

I'm a fool. You have no idea. When I first started being a caregiver for my mom, I was firing her doctors left and right. The first was a pill pusher. Anything she would mention, he just wrote it up and sent her off to the pharmacy...without even touching her or looking up from his prescription pad. So, I thought she needed better care than that's and that is where my foolishness began. Next doctor (on our first optimistic visit) took her off of her blood pressure pills for a substitute because my mom mentioned she has to get up and pee during the night. The next day I had to take her to the ER with a blood pressure reading of 218. Then I found the perfect doctor. Hands-on and super caring who refused to take her on as a new patient. I was pretty confused till he told me he was retiring in a month, I told him to give me a call when he's running his practice from his garage. But he gave me a name of a doctor who he thought could help. I was so frustrated with this search that I may have been to blame for his firing. He was going on about my mom needing to lose weight and he was pretty huge. Then I accidentally said a "f---!" or something like that and he turned into a principal almost making me apologize to the rest of the class. There was another I can't recall but you say look for another doctor and I say I should have stayed with the pill pusher. I always held doctors to the greatest esteem until I had to find one. Doctor House doesn't exist. 

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Gonzo43

I think I came here for this! I'm new this and now realizing that I should have been preparing myself better. I'm learning so many things now that I'm paying attention to my mother. I just learned about sundown which my mother has recently developed more but I should have noticed no ths ago. Don't give up because in the end you'll look back and realize you did something wonderful for someone you loved beyond comprehension. You'll never have to explain your absence to anyone. People see what you are going through and are scared to offer help because they don't know what you're going through. They don't know that you reached out to forum desperate for help just like I am here at 3am in the morning, stressing out having panic attacks cause I had to rush my mother the the hospital not understanding what's happening. My head is full tilt now. I've cried all day like my mother has already passed away while she is still smiling at me walking into a room asking me for the first time if I knew what time her son was coming home. My heart shattered yesterday and I've felt lost. Don't give up! That's all of us care takers. You're not alone. Take care of yourself first and take deep breath. God bless you and your mother.

FloydSnax

Gonzo

This site has saved me from completely losing everything. I was at wits end when a few people reached out and their advice changed me (and this horrid experience) overnight. It's still horrible, but at least I can deal now. But it's still hard as hell. Even tonight, she was just manic and sobbing about a kidnapped girl who was just here, and they took her, and the police are going to think she's involved...I mean, how do you respond to this...every 5 minutes. Then I realize I could say anything because in 5 minutes she'll be back with the same thing. But this behavior only happens once a week and I'm sure its occurrence will only increase. But I can deal with that. It's frustrating but you can't get upset at having to repeat yourself over and over. You can't get upset over anything a loved one with this disease has done. And I don't know who she really thinks I am. But I know she feels safe with me and isn't scared. Which is really the most important thing to me. I have visions of her, alone at a facility, and scared all the time and it rips my heart out. I can't do it. darn*, I was just gonna say a line or two of encouragement and I ended up venting again. Thats another great thing about this site. You can vent and not even want a response, but the responses totally help. Good luck to you and fight on!

FloydSnax

Victoria

Very helpful. Thank you.