Confusion(1)

LauraPaul

I don't know who is more confused...my LO or myself...or perhaps both of us are confused

I am confused because he seems to constantly change...his thoughts..his actions...his behaviors  I am on a roller coaster and I know he is also 

Folks tell me it will only get worse. I can't even imagine how I am going to be able to do this...I don't know he will be able to do this...

What do you do when the person you love most in the world is slowly going away?  Grief deep grief

Gig Harbor

Laura I don’t know how to handle this confusion. My husband has so much energy and the sundowning that starts around 4 is horrible. I can’t imagine doing this for an indefinite time especially as it will only get worse. He is like a caged animal in the house because he can’t go outside by himself and I have had to lock up the lower level of our house as he is trying to unplug everything and take things apart. I have looked at memory care facilities and have chosen one. I feel like a failure if I give in and send him since others have kept their LO home for years.

Quilting brings calm

Gig - you are not a failure.  You are doing this for him - because a staff  that goes  home at night and recharges is better equipped than one person 24/7- who never gets to recharge.  Do not judge yourself by other peoples choices. 

Laura - I’m so sorry that it’s reached this point.  The constant confusion on their part is so stressful for us and we can’t talk it over with the person we want to most. 

toolbeltexpert

Laurapaul I get it. Today I felt totally overwhelmed. I started working outside, I stopped one project cause it's high energy, "cutting wood." Then I looked at all the other things that have to get done. I almost didn't know where to start. Then dw filled a hummingbird feeder a second time, she just can't remember filling it less than a hour before. I almost lost it, I have so much work to do around our farm. I had to chose cause if I didn't she would have keep doing it over and over. I just quit and took her out for lunch. Sometimes you just gotta pick and chose what's more important. We got lunch and I got refreshed, came home and got the farm sprayed for weeds 4 hours worth. Another thing off the list. Sometimes it can just be overwhelming! I was ready to sell the farm this morning! 

Gig your a great caregiver, someone who does so much, but you can only do so much. I think it is a sign of a good caregiver to recognize that we all have limits. I have been looking into a place in case I can't do this crazy stuff. 

Joydean

“Crazy stuff “ is a very good way to call Alzheimer’s. Just when I think I can’t do this anymore, we will have a “good day “. Which simple means today is not as bad as yesterday, and DH tells me how much he loves me and admits he needs me! Yes I then feel guilty! 

Gig, you are a wonderful caregiver and a great help to many. I know because I’m one of the people you have helped! Be kind to yourself! 

Pat6177

LauraPaul, it’s the constant change that keeps me off balance. The confusion makes me sad, the ups and downs leave me wondering some days if I’m a pessimist and he’s really not that bad and then other days the reality of the deterioration catches me off guard. I try to roll with it and sometimes succeed, sometimes not.

Ed1937

I think these roller coaster actions make things really hard. It's like you have no idea what world they are living in at any particular time.

Davegrant

Yes, I feel that deep grief as well and it comes in and overpowers the super annoyed feelings as DW changes course in her behaviors. I often think of this disease as the subtle disease, when this all started about five years ago those changes in my DW were so small I was never sure what I was seeing.  This kept me very unsure. about everything. So, it is with the progression of the disease and the feeling of DW going away. I only catch glimpses of it as I walk into a room, and our eyes make contact. There is that moment of non-recognition that I sense from her, that says to me "who is this guy". She is into her own world for a split second. That time may expand. I hope not. 

As for the confusion, the last couple of years, she has been hiding her and my medications, her money, and her purse. I spend a lot of time searching for these items as DW eventually goes into a lot of stress over the losses. I usually find them often by accident and then I put them in a place that I can find them and it's all happening so regularly that I forget where I put them, so I don't know if I am looking for her or the ones I hid. I solved my medicine problem by locking mine in an old-fashioned file cabinet with a solid lock, but she doesn't want me to lock her medicine and that causes her greater distress. DW also has anosognosia, which makes me alone in dealing with situations.  So, confusion prevails, and each day brings new problems to solve. 

I sense that I will run out of solutions and when and if I do, I will have to consider placement, but I am planning to try my best, but I fear there will come a time when that is not good enough for her well-being and or safety.  I could be years or days; such is the nature of this disease. 

NylaBlue

 The PWD changes as the damage caused by the disease increases.  It seems as soon as I get used to a behavior it gets worse and another one pops up to boot. I’m near the end of my rope with my stage 6 husband, even with five hours of day care, three times a week (effectively 12 hours a week since there is a one hour roundtrip drive every day). Two years ago he was eating, grooming, bathing, toileting and dressing independently. Now he needs my help for all of that. It’s just wearing me down and I am seriously considering placement, though it would be financially difficult and cause much conflict with his family.

GIg Harbor, you will always be an amazing caregiver, whether you keep your husband at home or place him. We all have to weigh the pros and cons of placement every day. Keeping our LO at home is not better or worse than placing them in a good facility. The “right” decision depends on each situation and we should not have to risk our own mental and physical health to be considered good caregivers.

JDancer

The loss(es) and associated grief can be so overwhelming. I have lost my husband (to dementia, not death) but suffer the grief alone- no funeral or other ritual to help others understand. It's hard to grieve alone.

Pauline Boss's book Ambiguous Loss explains this well. She writes of many things I'm experiencing, but also describes other situations that are considered ambiguous loss. I found it helpful.

Wilpam

I'm new to this site but not new to caregiving. My husband has ony been diagnosed in March of this year, but I know it's been there for quite some time. He is 86 years old so this did not start yesterday.

I feel like there is constant confusion here and not just him. He changes so often that I become confused myself. Where did my sweet, loving man go. It seems like he lives in his own world and is totally unaware of anyone elses needs.

I all of a sudden understand what sundowning means.  He becomes quite loud about being hungry at 5 and if dinner isn't ready he is very vocal.

When it is ready, he doesn't even eat half, then cuts up the rest for our pup. He then proceeds to the kitchen and commences to eat anything he can find.

I will take him back to the l/r but he doesn't stay there long. Nighttime seems to be when he eats as much as he can find.

Is this what sundowning means?

Gig Harbor

Wilpam his behavior sounds like sundowning. The sun goes down and the confusion ramps up. Many caregivers say it begins around 4 and continues until bedtime. My husband has had it intermittently but it has been present for the last 4 nights and nothing I say or do can break the confusion. So far he sleeps thru the night so once he is in bed the house is quiet. I find myself staying up until midnight just enjoying the quiet time. That would be so annoying to fix him dinner and then have him feed it to the dog and then have him root thru the kitchen. My husband is still in his bedroom so I can only guess what today will bring.

Rescue mom

Wilpam,  welcome, but sorry you have to be here. We sometimes call it the club nobody wants to join…but here we are. There’s more practical, useful info here than anywhere else I’ve found.

Most people use “sundowning” to apply to the increase in any/all odd activities/forgetting that often starts late afternoon. It can be a host of things,  a noticeable worsening that can last a few hours.

One thing you mentioned, my DH with Alzheimer’s also does/did. He’ll say he’s hungry, eat anything I put in front of him, no complaints. But he only eats a small bit, leaves most saying he’s full, then goes straight to the kitchen and starts grabbing and eating like a starving horse.

 For a while it was anything sweet (wants sweets is common with Alzheimer’s, but a big change for him). Then I stopped having sweets, so he’ll grab almost anything—like a prisoner who’s hasn’t seen food for months. And yes, it was much worse at night.

It was worrisome (health) and annoying. I had to learn and get better about what to have around that he can get to, and how to save his leftover food if possible (he’ll eat it next day, doesn’t remember having it before). 

But yes, so much yes to what others said. There will be several bad days when I think he has to be placed, then there’ll be a day or two that’s not so bad, that I probably over-estimate. It should be so easy as to always be bad…it’s that bad-and-forth that kills us.

And yes, it gets worse. But maybe not horribly worse very fast.

Gig, I don’t know how you do it. One thing that helps with my DH is that he sleeps so much, all night, and “naps” during the day, and is not very active. He is “able” to, just isn’t. I’ve lost my best friend/companion/conversation partner, but there’s still a body here that is unable to do much at all. 

 It’s stressful and lonely, but at least not always physically exhausting. That ambiguous grief others don’t understand is so hard. Along with the confusion over what’s next..

Wilpam

I was staying up late at night and enjoying the quiet with no chaos. But my health was starting to get off a little snd I realized I wasn't getting enough sleep. No so good for us caretakers. If I can't care for him, all the rest of our family is back in NY, so I have to be careful and take care of me. Everybody tells me that, but they are not in this situation so they can possibly understand.  This is not something you learn in school!

!

Gig Harbor

Wilpam you are so right about needing enough sleep. Two nights a week I try to go to bed by 10 but the quiet, dark house is so appealing. Today is settling in to be a good day and we will take the dog for a walk. Maybe sundowning won’t happen but I am not going to hold my breath.