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Mom is having more incidence of get up through the night confused... she wanders the house which makes it hard to get a good nights sleep and is a real problem when I have to be at work at 4:30 am...
Last night she was at me door asking if I was going to sleep all day... she said it is 12 o'clock and I am still in bed... get up!
I said Mom... it is 12 midnight and I have to get up to get ready for work in 3 hours... it is not noon it is midnight... and then we have a long discussion... I show her the street lights and it being dark... by the time I get her settled I don't get back to sleep...
The home is not large so I don't see how I wouldn't be awaken during the night... caregiver or not?
Am I missing something?
Still no help asking family to come sit with her or better yet pick her up once a month for an over night or even taking her to church which is something she really misses... I make sure to take her every Sunday... but during the week I am working.
Don't get me wrong... they are always very hospitable and mostly receptive to short notice visits... but only with me staying.
The second part is selecting a caregiver... several of the tenants I have managed over the years do in home care through agencies... none of them would I want in my home... they have all had issues and several were fired... one for items missing and another for improper care and another for meds that were missing.
I have given a lot of thought about resigning but the truth is working does give me some time away...
In a perfect situation... Mom would love to travel and she travels well... she is always ready to go somewhere and no problem "Coming along for the ride" as she puts it.
I have asked her why travel is so enjoyable and she said it is that she is coming along for the ride without a care... opposed to being home where she is constantly looking for things "Needing" to be done.
I am sorry to hear this development.
My mom has vascular dementia and this was one of the earlier manifestations of her dementia. In retrospect it was happening even when she was otherwise pretty competent and independent because it was driving my dad sort of crazy when he was still alive.
One time at least a year before he passed away (so this was at least three years ago), he called me totally exasperated because Mom had GONE TO BED around 4 pm (she started going to bed earlier and earlier and getting up earlier and earlier) and she got back up around 8 pm. My dad was at the other end of the house, and still hadn't gone to bed yet and he smelled bacon and coffee. He went into the kitchen and she was making breakfast and said brightly "Good morning! " Now this was in the winter and it was already dark but when a person gets up at 4 am I guess they don't think it's odd to be dark when they think it's morning.
Dad tried to tell her that it was 8 PM and she actually did not believe him. Then she started going outside looking for the newspaper - at 9 pm, 10 pm, even 11 pm. Dad pointed out to her over and over again "It's DARK outside - the paper comes when it's light outside! You have to believe me!" She never did admit to being wrong but eventually she did just go back to bed, pretty mad actually. Very argumentative about it.
It just got worse as her dementia progressed. She simply became totally unable to track time by any means. Now she has no idea what time, day, month, or year it is.
My MIL had Alzheimer's and she also started getting up in the middle of the night. Thankfully she did this pretty early on when we were trying to keep her in our house - she got up in the middle of the night and actually took a bath. Considering that she had gotten "trapped" in the bathtub once before and sat in cold water all night long till someone found her the next day, it would have been very easy for that to happen again or worse yet, for her to fall in the bathroom at the opposite end of the house and no one hear her till the next day. So we quickly decided we just couldn't risk that and moved her to an assisted living facility. She was furious but at least we could sleep at night.
This must be pretty common behavior. It always makes me wonder what they actually SEE when they have dementia. How can they not tell that it's day or night? I have no idea.
Mom is having more incidence of get up through the night confused... she wanders the house which makes it hard to get a good nights sleep and is a real problem when I have to be at work at 4:30 am...
Last night she was at me door asking if I was going to sleep all day... she said it is 12 o'clock and I am still in bed... get up!
I said Mom... it is 12 midnight and I have to get up to get ready for work in 3 hours... it is not noon it is midnight... and then we have a long discussion... I show her the street lights and it being dark... by the time I get her settled I don't get back to sleep...
The home is not large so I don't see how I wouldn't be awaken during the night... caregiver or not?
Am I missing something?
Still no help asking family to come sit with her or better yet pick her up once a month for an over night or even taking her to church which is something she really misses... I make sure to take her every Sunday... but during the week I am working.
Don't get me wrong... they are always very hospitable and mostly receptive to short notice visits... but only with me staying.
The second part is selecting a caregiver... several of the tenants I have managed over the years do in home care through agencies... none of them would I want in my home... they have all had issues and several were fired... one for items missing and another for improper care and another for meds that were missing.
I have given a lot of thought about resigning but the truth is working does give me some time away...
In a perfect situation... Mom would love to travel and she travels well... she is always ready to go somewhere and no problem "Coming along for the ride" as she puts it.
I have asked her why travel is so enjoyable and she said it is that she is coming along for the ride without a care... opposed to being home where she is constantly looking for things "Needing" to be done.
I am sorry you are going through this. It is heartbreaking for you and your Mom both.
My thoughts having gone through having a parent with Alzheimer's.
1) There is no explaining nighttime, showing her lights, etc. You can explain and discuss and point to thing until you are blue in the face but it won't matter. Her brain isn't working. You might as well stop doing that because it is an exercise in futility and burns up time.
2) You wouldn't have to be woken up if there is a skilled caregiver who has experience working with sundowners. They will know how to distract your mom. Part of how your Mom is behaving is the anxiety of being confused. If someone is there to be a front line to let her know she's OK the anxiety will lessen.
3) As for getting a break, you are going have to get more forceful about it with your family. Tell them you are bringing Mom for a visit and leaving her with them overnight or whatever. You are going to have to play the guilt card with them: "Mom is YOUR Mom too and you have just as much responsibility to her as I do. I have taken most of this on and I'm not complaining but SHE needs the additional support of family and she wants to be close to you in these last years."
4) DO NOT quit your job. Honestly that is the worst thing you can do.
5) The part about knowing in-home caregivers that you wouldn't want in your home -- that's where you have to start asking for referrals from people you trust. My NextDoor site always has people asking for recommendations and they get good ones from neighbors.
6) Let me ask you this: What happens if you "go down" -- God forbid suffer an accident, a heart attack, or just a really bad flu. What happens then? Doing what you are doing with no team or handoff is just a disaster waiting to happen. I am not trying to be all doomsday here but I'm trying to impress upon you the need to have additional vetted resources in place that you can call.
7) The dementia is only going to get worse from here, I hate to say. You need to pull together people who can help you through this. People who have training and have dealt with this sort of thing.
You have my compassion. It is truly gut wrenching on so many levels. I am still not quite right from going through it.
I am sorry you are going through this. It is heartbreaking for you and your Mom both.
My thoughts having gone through having a parent with Alzheimer's.
1) There is no explaining nighttime, showing her lights, etc. You can explain and discuss and point to thing until you are blue in the face but it won't matter. Her brain isn't working. You might as well stop doing that because it is an exercise in futility and burns up time.
2) You wouldn't have to be woken up if there is a skilled caregiver who has experience working with sundowners. They will know how to distract your mom. Part of how your Mom is behaving is the anxiety of being confused. If someone is there to be a front line to let her know she's OK the anxiety will lessen.
3) As for getting a break, you are going have to get more forceful about it with your family. Tell them you are bringing Mom for a visit and leaving her with them overnight or whatever. You are going to have to play the guilt card with them: "Mom is YOUR Mom too and you have just as much responsibility to her as I do. I have taken most of this on and I'm not complaining but SHE needs the additional support of family and she wants to be close to you in these last years."
4) DO NOT quit your job. Honestly that is the worst thing you can do.
5) The part about knowing in-home caregivers that you wouldn't want in your home -- that's where you have to start asking for referrals from people you trust. My NextDoor site always has people asking for recommendations and they get good ones from neighbors.
6) Let me ask you this: What happens if you "go down" -- God forbid suffer an accident, a heart attack, or just a really bad flu. What happens then? Doing what you are doing with no team or handoff is just a disaster waiting to happen. I am not trying to be all doomsday here but I'm trying to impress upon you the need to have additional vetted resources in place that you can call.
7) The dementia is only going to get worse from here, I hate to say. You need to pull together people who can help you through this. People who have training and have dealt with this sort of thing.
You have my compassion. It is truly gut wrenching on so many levels. I am still not quite right from going through it.
This is a great post! Full of excellent advice and insight.
And yes, dealing with dementia can honestly feel like PTSD. I am not exaggerating.
I am sorry you are going through this. It is heartbreaking for you and your Mom both.
My thoughts having gone through having a parent with Alzheimer's.
1) There is no explaining nighttime, showing her lights, etc. You can explain and discuss and point to thing until you are blue in the face but it won't matter. Her brain isn't working. You might as well stop doing that because it is an exercise in futility and burns up time.
2) You wouldn't have to be woken up if there is a skilled caregiver who has experience working with sundowners. They will know how to distract your mom. Part of how your Mom is behaving is the anxiety of being confused. If someone is there to be a front line to let her know she's OK the anxiety will lessen.
3) As for getting a break, you are going have to get more forceful about it with your family. Tell them you are bringing Mom for a visit and leaving her with them overnight or whatever. You are going to have to play the guilt card with them: "Mom is YOUR Mom too and you have just as much responsibility to her as I do. I have taken most of this on and I'm not complaining but SHE needs the additional support of family and she wants to be close to you in these last years."
4) DO NOT quit your job. Honestly that is the worst thing you can do.
5) The part about knowing in-home caregivers that you wouldn't want in your home -- that's where you have to start asking for referrals from people you trust. My NextDoor site always has people asking for recommendations and they get good ones from neighbors.
6) Let me ask you this: What happens if you "go down" -- God forbid suffer an accident, a heart attack, or just a really bad flu. What happens then? Doing what you are doing with no team or handoff is just a disaster waiting to happen. I am not trying to be all doomsday here but I'm trying to impress upon you the need to have additional vetted resources in place that you can call.
7) The dementia is only going to get worse from here, I hate to say. You need to pull together people who can help you through this. People who have training and have dealt with this sort of thing.
You have my compassion. It is truly gut wrenching on so many levels. I am still not quite right from going through it.
All good points and thankfully I have been healthy... 27 years and not a sick day off at work... really.
If something did happen... they would have no choice but to step in.
One sister in law is a Doctor... she has said several times hard decisions are ahead.
Other than developing an insatiable appetite... Mom is physically quite fit... even at 84... she is only on eye drops... that is it for meds.
She did have aricept and namenda which was a terrible year for her... excruciating headaches and spent many days in the recliner... something I had never seen in my life...
We went on a trip and her aricept and namenda got left behind... her headaches totally stopped... the Doc said it was her choice as neither is a cure and the side effects in her case were bad.
All the kids got a pass for the most part the 5 years Mom nursed Dad through cancer... she was super woman and she also along with all of her brothers and sisters took care of Grandma... large farm family with 8 living kids and each family took a week outlined on a calendar... they were all local and Mom would fly back to do her weeks... someone from each family was there and Grandma had round the clock care.... which Mom as a RN of 40 years organized without the slightest complaint from her siblings...
It does seem the old way of family taking care of family is fading...
I have done some checking with co-workers who have been very satisfied with in home help... their parent(s) still live in the family home not like my situation where I moved in to take care of Mom...
Several I contacted are booked long term and most were unwilling to work in East Oakland... which is something I never thought about... geographically challenged.
C-D has helped me through some rough patches with Alzheimer...
My mom has vascular dementia and this was one of the earlier manifestations of her dementia. In retrospect it was happening even when she was otherwise pretty competent and independent because it was driving my dad sort of crazy when he was still alive.
One time at least a year before he passed away (so this was at least three years ago), he called me totally exasperated because Mom had GONE TO BED around 4 pm (she started going to bed earlier and earlier and getting up earlier and earlier) and she got back up around 8 pm. My dad was at the other end of the house, and still hadn't gone to bed yet and he smelled bacon and coffee. He went into the kitchen and she was making breakfast and said brightly "Good morning! " Now this was in the winter and it was already dark but when a person gets up at 4 am I guess they don't think it's odd to be dark when they think it's morning.
Dad tried to tell her that it was 8 PM and she actually did not believe him. Then she started going outside looking for the newspaper - at 9 pm, 10 pm, even 11 pm. Dad pointed out to her over and over again "It's DARK outside - the paper comes when it's light outside! You have to believe me!" She never did admit to being wrong but eventually she did just go back to bed, pretty mad actually. Very argumentative about it.
It just got worse as her dementia progressed. She simply became totally unable to track time by any means. Now she has no idea what time, day, month, or year it is.
My MIL had Alzheimer's and she also started getting up in the middle of the night. Thankfully she did this pretty early on when we were trying to keep her in our house - she got up in the middle of the night and actually took a bath. Considering that she had gotten "trapped" in the bathtub once before and sat in cold water all night long till someone found her the next day, it would have been very easy for that to happen again or worse yet, for her to fall in the bathroom at the opposite end of the house and no one hear her till the next day. So we quickly decided we just couldn't risk that and moved her to an assisted living facility. She was furious but at least we could sleep at night.
This must be pretty common behavior. It always makes me wonder what they actually SEE when they have dementia. How can they not tell that it's day or night? I have no idea.
The looking for the newspaper is now routine... this morning Mom said she was outside a couple of times checking for the paper because it was suppose to rain... and rain is in the forecast... but the paper never comes at 2 am or 4 am...
Being hungry after a full meal or just having a full meal is another surprise to me... I would think the body would know.
The big White Boards helped for awhile... I have two of them... each says the same.... Good Morning... today is **TUESDAY** NO CHURCH TODAY or TODAY IS SUNDAY 8:30 AM CHURCH TODAY...
Now they are not so effective... as Mom asks over and over again what day it is how soon is Church and I point next to the White Board and read it...
Is it typical to get something stuck in your head where it just stays?
Mom was certain her friend in Germany called and was coming for a visit... odd, but things like this have happened before on short notice... she was in a flurry of activity with a list of what needed to be done...
I was completely off guard so I called Germany... not only was her friend not coming... her funeral was today... strange... maybe someone did call to say she had passed or not... why, after such a long time did this name from the past pop up and on the day of her funeral thousands of miles away?
The looking for the newspaper is now routine... this morning Mom said she was outside a couple of times checking for the paper because it was suppose to rain... and rain is in the forecast... but the paper never comes at 2 am or 4 am...
Being hungry after a full meal or just having a full meal is another surprise to me... I would think the body would know.
The big White Boards helped for awhile... I have two of them... each says the same.... Good Morning... today is **TUESDAY** NO CHURCH TODAY or TODAY IS SUNDAY 8:30 AM CHURCH TODAY...
Now they are not so effective... as Mom asks over and over again what day it is how soon is Church and I point next to the White Board and read it...
Is it typical to get something stuck in your head where it just stays?
Mom was certain her friend in Germany called and was coming for a visit... odd, but things like this have happened before on short notice... she was in a flurry of activity with a list of what needed to be done...
I was completely off guard so I called Germany... not only was her friend not coming... her funeral was today... strange... maybe someone did call to say she had passed or not... why, after such a long time did this name from the past pop up and on the day of her funeral thousands of miles away?
Odd about the friend in Germany, but it would make sense if they did call and tell your mom she had died. Then your mom would have gotten confused and could only remember someone about the friend.
As for the white board, the home makers used them for my cousin before she went into a facility. It was supposed to help her keep track of things. However, my cousin was paranoid and would hide it so no one would steal it. I sent another white board but she hid that one too.
In the facility now, she still hides everything. I brought pictures for her walls. Hidden. Cute coasters for her bedside table. Hidden.
She's been there for over 6 minths now with no change except she now refuses to participate in activities. She tells me to get her out of there, that she hates it.
They tell me she is very depressed and won't even go on excursions in the van. She sits in her room and won't come out.
It's making ne mad because when she lived in her house she would complain that she was all alone and never saw another person. I'm arranging for a companion who will visit her and take her out for rides. We'll see. I bet she'll find fault with that too.
And she's healthy as an ox! IF they can get her out of her room into the dance class, she's great and she gets everyone dancing. So I wish she would either try to be happy or else go downhill toward death. That's the brutal truth.
There are times I am at my wits end... which is a huge departure because one attribute I have always had in abundance is patience.
Her friends, neighbors and former co-workers come to me... asking why she has nothing to eat... she eats all the time and fresh groceries 3 times a week... they also tell me she will call them at odd hours such as 3 am or 5 am to ask what time is Sunday church any day of the week... Mom always slim and fit has gained 24 lbs this year... her clothes no longer fit... and that can't happen with nothing to eat which is a new pastime... foraging...
The frustrating part is I can answer that question 25 times... I have have the parish Mass schedule hi-lited and posted plus the Whiteboards in large format... yet, she insists on calling someone just to make sure which makes me look like a total incompetent...
Church for the last several years is 8:30 am Sunday... one shot... no other options and I ALWAYS take her... we were there today... it is not even Noon and she just was on the phone asking what time Sunday mass is "Just to be sure"
The hiding things is another thing that drives me up the wall... mail is a big one... never have ever been late on anything ever until this year... I tried the locking mailbox but she wait for the letter carrier...
Same with the newspaper... for a long time the newspaper was her anchor... each and every page has the date... it was very helpful and a great resource... but going to check getting up to get the paper at 1 am because someone might take it and keep on checking until it arrives around 6 am means no rest... what is worse is knocking on neighbor's doors at 5 am asking them if they received their paper... some don't even take the paper... these are neighbors of 50 years... old themselves.
I have come to regret moving back home and renting my home out...
The plan was to have Mom come to my home which she absolutely refused... my thinking is since traveling was like night and day and generally very enjoyable since as she said she was just along for the ride without any responsibilities... it might be the same if she were to live with me...
Minor things... I have been buying lots of apples and bananas... Mom always has a bumper crop of apples... so much that she gives most away...
This week I said how can you be eating so many apples... I can't keep them in the house.
Turns out she has been giving them away to the neighbors saying they are ones she raised... but hers were gone months ago...
I hope eating bananas in excess has no side effects... near as I can tell... 4 to 5 each day.
I now need to use the neighbors trash cans if I want to throw something out.
Even simple things like an empty shampoo bottle that I put out in the recycle bin will be retrieved, washed and dryed and back in the bathroom because it was too good a container to just throw away... and this is with just about any container.
I never new a paper ice cream carton could be cleaned so well you would never know it had been used and retieved from the trash... thankfully the neighbors don't mind me using their cans...
Sorry for venting again... but she checking the mailbox for the 4th time saying the mail is late today... it is Sunday!
Not expecting any replies and I thank those that have.
Last edited by Ultrarunner; 12-09-2018 at 01:23 PM..
The hiding things is another thing that drives me up the wall... mail is a big one... never have ever been late on anything ever until this year... I tried the locking mailbox but she wait for the letter carrier...
I would get a PO box if I were you. Sure it requires a trip to the post office (or UPS store) to get the daily mail but it will save a lot of hassle in the long run if something important gets taken from the mail and hidden.
I'm sorry you are going through this. It's clear to see what paid caregivers face when clients tell their family members "I haven't eaten" when they actually have.
Unfortunately she is getting out of the house at dawn and it's winter. You don't think an overnight caregiver is a good idea? ETA sorry that sounded snarky, not meant to be. I just recall your thinking about pros and cons of a caregiver and I was revisiting that.
Throw logic out the window, because from my perspective watching my Dad with dementia was completely whack. Do your best with the cards your Mom deals you. Don't beat yourself over any decisions you make. At the end of the day they'll all be the right ones. When I look back, it's easy to say I could have done better. But under a microscope, whatever I did was the best I could have at that moment. If I could have done better (whatever that means), I would have. I considered myself very lucky as a caregiver that my parents set themselves up financially enough that I could afford to have 24/7 care at home. It took a great burden of time off my shoulders.
I wish you the best in these most difficult of times.
Ultrarunner I don't know how you stand it. I commend you.
The hiding stuff, the hoarding everything is like my cousin. OMG, her garage, guestroom, full of broken stuff that she had to save.
I was going to suggest the p.o. box too.
As for the phone calls in the middle of the night, can you disconnect the landline and just use your cell phone?
It must be embarrassing to you when she does stuff with the neighbors. Calling them, saying she has no food, etc.
We get blamed for what they do. That makes it worse.
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