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Why didn't I think of this?! A/L
rose_ro
Posted: Thursday, March 1, 2012 9:22 AM
Joined: 12/21/2011
Posts: 2431


I wondered here 6 weeks ago about a checklist in ''placing'' folks...

 

I wish I had remembered the one question that matters most in my mom's life - can she be alone?

 

I  had wondered about this task or that that she can do, but forgot that two years ago I realized that my mom just can't be left alone for any period of time, even in this house...

 

Why did I forget that?!!  I think it's because she's in skilled nursing, and is ''alone'' at times, especially over night...But - she's asleep!  lol, and my father stays late with her, and is up early to see her...She's also in bed, with other people around...

 

My mom is not moving to AL right now, the UTI and diverticulitis threw her off almost a month ago...I saw her as ''improving'' and just concentrated on that a month ago...I was concerned about her even before that, but, most people were positive about her moving...

 

I really thought Memory Care might be a place for her...AL / Memory Care would be even better, but I know there are some benefits in MC that might help her..They don't have AL/ MC in this place...

 

At the time, there were no available rooms, and my parents couldn't be there together...but then, here comes those evil infections!

 

So, my father is in AL, and my mom has been down there during the day, and ''ok.'' But once the evening comes, things are different. t he place seems strange to her...we need to get some more lights around the place, but all of a sudden it hit me either when I was there with her, or when I was talking to my father -

 

unlike SN, my mom cannot be left alone in the AL room.

 

I never ever remembered this last month when thinking about it....I thought of this or that, but all of a sudden it was crystal clear to me - we've never left my mom alone...it's different for her when she's in the house and upstairs in bed...she doesn't have to have someone with her all the time here, in the room, but she knows someone is some and taking care of her, looking out for her...

 

But if she's in this new place by herself, it's going to be different..especially at night...or the evening...she had kind of stopped ''sundowning'' in SN before the UTI, and had stopped at home...I always think she's ''stronger'' than she probably really us.

 

I think when my sister's kids come to visit, it will help, to have them be in the room....but if she's ever in the room by herself, it will bother her at some point...and my father just can't be with her 100 % of the time, something will happen, that's life.

 

When this occurred to me, I realized that every other woman living in A/L, has to be able to be in the room alone, even if they can't do other things...that was always the emphasis, can she walk, can she stand up, can she eat, etc...There are other women in the AL who get around in wheelchairs or walk with a walker...but that's not the issue with my mom, it's the being alone that will bother her...So now we have to figure this out...

 

I used to wonder why some spouses live in IL, while others live in SN...all of a sudden, I ''got'' it...

 

I kind of think my mom also likes being ''alone'' in SN...my mom has always done a lot for my father, ''taken care'' of him...i think she's tired of taking care of others, and being in the SN allows her not to have to do that...

 

always learning!


rose_ro
Posted: Thursday, March 1, 2012 9:32 AM
Joined: 12/21/2011
Posts: 2431


When my mom is ''better,'' ''stronger,'' not having the effect of the infections still bother her, she will ''get'' some things she doesn't get now..

 

Two years ago, when she had the UTI, she didn't know she could leave the room!  She didn't know how to...she'd sit on her bed and ask for ''someone'' to help her...When i told her that story as she got a lot better, she'd laugh!  That's so unlike her...

 

But yesterday, we were in one part of the rooms, and she didn't ''get'' that my father was on the other side of the wall, napping...

 

I know she was tired yesterday, and hadn't eaten enough lunch...but this is something I didn't even want to think about happening again last month...

 

oh well!  Live and learn...


MacyRose
Posted: Thursday, March 1, 2012 11:59 AM
Joined: 12/15/2011
Posts: 3935


Rose, What an interesting insight!  I think my mom is getting to that point.  If my dad is away from the house, she will start calling and calling him to find out where he is.  Also, at my house, she couldn't figure out how to go from the entry hall into the master bedroom and through the bathroom into the closet.  I've lived in this house for 15 years, but she just couldn't figure it out.  Also, she has started sleeping in the same guest room with my dad as of a couple of months ago.  Before that, she insisted they had to sleep in separate rooms because my guest rooms only have queen sized beds and they are used to sleeping in a king bed.  But now, she wants to sleep in the same bed as dad so she is not alone.
rose_ro
Posted: Thursday, March 1, 2012 12:16 PM
Joined: 12/21/2011
Posts: 2431


Yep, it's a huge insight, and it's key - because I never ever ever remembered it.

 

You know why?  Because she was spending so much time with my father that things seemed so good...

 

The hard part is that if she had not had to go back to the hospital, things would have moved along nicely - but it is what it is!

 

On the other hand, maybe we've learned something for the future...I'm not even sure if others there get this....but one or two people at the place will understand..I'm not sure if my father even ''gets'' it.  But I know when talking to the right people that they'll understand.  I don't know if I see a lot of other people there who fit this description. 

 

This is also why I didn't see some of the things happening with my mom a few years ago.  When my parents are together, they work really well together.  What one might ''lack,'' the other supplies or helps out with.

 

So, 5 weeks ago, this is the way things were.

 

Also, my mom was able to take medications / supplements herself, could floss her teeth, feed herself, etc etc.  She was getting so ''independent'' in a sense that they had to put a wanderguard watch on her, to keep her from leaving...not that she probably would, but you couldn't be sure.

 

she can't do a lot of those things now.  She isn't eating most of her dinner on her own, not sure about other meals (my father is with her then, and also she's been getting some ''therapy'' support still when eating, not sure if it's occupational or speech)...

 

She still wears the wanderguard watch, but her chance of getting up and leaving are very small now...

 

She isn't as mentally quick as she was 5 weeks ago, etc etc.  Physically, except for getting tired at some point, she's actually pretty good,  but not where she was 5 weeks ago.

 

I know she'll get stronger again, at some point...mentally, emotionally...But really, this is something that would have mattered 5 weeks ago but I didn't consider.

 

She always comes back from these ''bad'' places, but my brain is still amazed that I didn't remember this.  I can recall twisting and turning in my head whether or not she could be in IL, AL, whatever.  A  lot of the improvements I saw in her were connected to the amount of time she spent with my dad, but also we didn't worry about leaving her alone.

 

Two years ago, in February, my mom was still able to drive to the bank.  But if it was dark, and she was alone here, she panicked.  The meds are probably also helping now.  But that was when we stopped letting her be alone for any period of time.

 

I really thought she'd want to be back with my father asap.  She did seem to want that a few weeks ago.  She does spend time with him, alone, and just a short period of time might be enough for her. 

 

This also ties into some things that I realized about two years ago.  One day, I thought - wait a minute - both my grandmothers lived on their own, after their husbands passed on.  Mom couldn't do that.  She wouldn't be able to pay bills, cook, etc.  and she'd be afraid when she was alone.  The normal things a person would do to bide time if they were alone just weren't there with my mom.

 

How did I forget this?!  Wow...I know I looked at her interacting with the staff there, and was just happy that she did well...that when she was with others, she could enjoy herself.

 

but the moment she's alone, really alone - well, she won't do what others will do.  She does need that attention and care.  Why in the world didn't I remember this, lol.  One reason I'm so tired is that I was always with her here!  And still go to see her a lot there. 

 

 

 

 


MacyRose
Posted: Thursday, March 1, 2012 12:42 PM
Joined: 12/15/2011
Posts: 3935


I wonder if this is kind of like with little kids.  You know how a child age 3 and under usually wants to constantly be with mom or dad because they don't understand that mom and dad don't cease to exist if they are out of sight? 

 

Hey, I wanted to ask you, are you giving your mom coconut oil?  I'm thinking of trying it on my mom.  I bought some yesterday and thought I would make her some fudge - she likes sweets...


KML
Posted: Thursday, March 1, 2012 1:33 PM
Joined: 11/30/2011
Posts: 2105


I have a situation with my father.  He's still mentally alert, at least more so than the most of the residents in memory care.  He's alert enough to know that something is wrong with them.  He is still social, can carry on a conversation.  He can't remember what he ate, and he needs assistance with toileting.   The staff is always telling me my dad doesn't have memory issues, they are wrong, they are not trained in my opinion.  He definitely has memory issues, maybe not Alzheimer's, but mostly probably vascular dementia.

 

He is in between, he needs the attention of the memory care staff being there all the time, he needs to be taken to meals, he needs help with dressing, etc.

 

I would love to have him in assisted living, because I think it would be happier for him to be around more normal setting, but he would not do well at all to be alone, he probably would never come out of his room, he wouldn't be able to get himself to the dining room or know that it was time to go to meals.

 

Not enough staff to take care of his bathroom needs in assisted living, especially at night.

 

The alternatives for someone in between are limited I'm finding.


rose_ro
Posted: Thursday, March 1, 2012 1:56 PM
Joined: 12/21/2011
Posts: 2431


MacyRose wrote:

I wonder if this is kind of like with little kids.  You know how a child age 3 and under usually wants to constantly be with mom or dad because they don't understand that mom and dad don't cease to exist if they are out of sight? 

 

Hey, I wanted to ask you, are you giving your mom coconut oil?  I'm thinking of trying it on my mom.  I bought some yesterday and thought I would make her some fudge - she likes sweets...


  Not so sure it's like with kids...more on that in a minute...

 

I KNEW something was ''off'' last month but could not put my finger on it...I'd watch my mom interact with others, and knew she was getting ''better'' with so many things...

 

Before she fell, she brushed her own teeth here, got ready for bed, knew when she wanted to go to bed, did dishes, told me when she needed to eat something, went to the bathroom on her own...read magazines, sorted through paperwork, organized things...

 

she would do almost none of those things now...it's a little like ''learned helplessness'' where others are doing those things for her...I had hoped if she were in AL, some kind of ''independent streak'' would come back...it might, but it will be some time, for sure...she's gone through so much...

 

I'm not using the coconut oil right now, nor the MCT oil, I want to go back to using it...it was so easy when I did the cooking, and gave her food...

 

I thought about making her a shake today and bringing it...but then I realized I could add something to her shake there, around dinner, or even to her ice cream that she loves (that's how I knew something was really wrong, 4 weeks ago - she didn't want ice cream!  ditto the summer)

 

...it's been hard with the oils, because I thought this would be something I would do again for them in AL (or, for her),  it hasn't really worked yet...I haven't wanted to bring a large bottle to the dining area, lol...it's hard to keep up with everything...

 

I would definitely try it, if you can, see if you see some improvement

 

I really have used coconut oil for about 5 years or more to cook...my father doesn't like olive oil, so I started using it to cook fish, etc...

 

I am really really worn out...I feel like I give a lot, do a lot, and then others expect a lot, and don't take me into consideration...

 

I got so mad last night, about something else, that I'd just love to stay in bed today, all day, and forget everyone else!  I have been with my mother so much, and yet people disregard my ''opinion'' which of course is based on reality...

 

Ok, now I got lost in my thread, and have to re-read this.

 

I do think MCT oil and coconut oil helped my mom, but I haven't wanted to throw a lot at her...

 

I think what I am going to do is make a little container of pudding, add fruit and MCT oil and cinnamon to it and bring it to her...

 

the problems would come up when I would make food and not have a good place to put it in...

 

hmmm, I could also make a container of frozen fruit, mct oil and cinnamon and put it in the freezer then and add as needed to yogurt, etc

 

The MCT oil bottle is so large...


rose_ro
Posted: Thursday, March 1, 2012 2:08 PM
Joined: 12/21/2011
Posts: 2431


KML, I'm with you, that's my mom's situation..in a lot of ways...

 

I think she has VaD, too...

 

It's funny, I think I wrote above that I don't know others in her situation...it's because on a lot of levels, she's like the woman (and some men) in AL...but she can be even more alert than them, and even stronger (some of them are older, too, of course)...we have great conversations (when she's feeling better), she's very insightful..

 

She can be very aware of how different where she is is, how far it is from ''normal''...

 

part of me wanted her to be in memory care, but part of me was aware she might ''wake up'' one day and say ''hey, why am I here?''

 

She was more like that about 5 weeks ago...

 

it's like a conversation I heard with some folks in IL, they said something like, when I saw all these older people, I realized ''I'm old!''

 

If my mom sees people having different problems than herself, she may say, ''why am I here?''  and get very anxious...

 

Like, if they have these problems, I must have these problems!

 

People love my mom, they tell me that all the time.  I was thinking, hey great!  She is getting social interaction...But it has to be with people who are ''sharp'' - she doesn't like to sit at a table with people who can't keep up conversations (ie, some residents in SN repeat the same sentences, want her to pay attention to them, and she gets confused about what's happening)...

 

and the ''sharp'' people for the most part are the younger ones who work there, who can respond to her conversation with them....or the physical / occupational therapy...

 

But she wants that care, being taken care of, needs it at this point...for the basic things we all take for granted...

 

I guess different parts of the brain get affected?

 


rose_ro
Posted: Thursday, March 1, 2012 2:29 PM
Joined: 12/21/2011
Posts: 2431


 

MacyRose wrote:

I wonder if this is kind of like with little kids.  You know how a child age 3 and under usually wants to constantly be with mom or dad because they don't understand that mom and dad don't cease to exist if they are out of sight? 

 

Hey, I wanted to ask you, are you giving your mom coconut oil?  I'm thinking of trying it on my mom.  I bought some yesterday and thought I would make her some fudge - she likes sweets...


  Fudge would be great, I think  

 

I remember there being a recipe for it on the old board, or maybe on the coconut ketones website

 

I think they should eat whatever they like, if it helps  

 

I mix fish into my mom's ice cream  

 

My mom has never really liked ''being alone.''  I should have remembered this.

 

She isn't a really social person, going out all the time.  It's not like that.  It's more like she likes keeping people she cares about close to her.

 

She was an older kid in her family, and helped her parents, and siblings.  She lived at home like a lot of women in her generation until she got married.

 

She's kept me close to her in some ways I think because of this ''fear of being alone.'' 

 

I went through something like that at one period in my life.  a lot of people do, I think it's behind some of the reasons the wrong people get married, lol.

 

There's something that happens to people with this disease where they start wondering where others are...my father, mother and I would go somewhere two years ago, and my mom would say, ''isn't there someone else who is supposed to go with us?'' so it's a true confusion...

 

It didn't help that some of my siblings have moved away, with their kids, in the last couple of years...that's such a rough thing to do, in a way, ''to'' my mom because she loves her grandkids, spent a lot of time with them...

 

So now she doesn't get to see some of them at times  

 

The ''interesting'' thing is that since this last trip to the hospital, my mom has been having ''conversations'' with people we can't see  

 

She asked more about her parents, etc - which she wasn't doing three months ago (before the fall)...

 

My mom will be in bed at night,before she really falls alseep, and is ''talking'' to people.  My father says she does this every night...She has whole conversations!  I remember reading about this ''stage'' on the old board with others...

 

I remember something she said last night (to someone she can never identify to me   "Well, they left a mess, but overall it was a nice visit.''  I mean - HUH?!    But they're good conversations  

 

I know what you mean about kids not knowing where their parents are if they don't see them...but my mom wouldn't then remember her own parents, or other relatives...it's more like, that tranmission circuit really isn't functioning right now...

 

you know, it's more like trying to call overseas and not being able to get an answer  

 

When she tries again later - as things come together more for her - she will make that connection, and remember that he might be napping...

 

The whole time she's been in the care place, she has for the most part had trouble connecting that I go ''home.''  I think about 5 weeks ago, it was connecting more for her that I was only a short time away.

 

I'd leave the place, and literally call her in 7 minutes or less, and say "I'm home.'' Yet she would still think I had a long trip  home...and then about 5 weeks ago, she's joke that I was calling from a cell phone and wasn't home yet  

 

So there's so many levels of ''understanding.''

 

I always find it a marvel that I can get on a computer and communicate with others who understand ''more'' of this experience than some of the people I interact with there!

 

KML, by the way - I agree with the comment about ''experience.'' I saw a rehab place that's farther away from me than I'd go to have my mom be, but they advertise that there are ''dementia specialist nurses'' there or something.  Now I'm not sure that this place doesn't advertise that.

 

I do see the care and interest the people have here, for the residents, but I'm not so sure there's a high level of education or training for some of the nurses / aides.

 

Whenever we've been in the hospital, I've been convinced that the nurses there have more training / education than the care place we're at.

 

it's interesting that when they have open houses, the visitors meet a lot of people,  but how often do they meet the nurses / aides that care for the residents?  with my mom, some are so great, some not so great...