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Mom is in her new home.
Mom's Baby
Posted: Monday, January 9, 2012 1:49 PM
Joined: 12/19/2011
Posts: 1176


Danielle (dms), thanks so much for asking about me.   I'm doing better, and so is my mom. It's been a little over a week now, and it's been up-and-down, as it always is, but I do see improvement. And every day, I feel more and more secure in my decision to move her to the memory care facility.

 

I've visited a few times this past week with varying results. I've found it's way better if I can visit Mom during the day when there are activities going on. If I go in the evening during the week, it's usually around 7:15 or 7:30 pm before I can get there, and activities are pretty much over for the day. That's when the negativity can begin, and the asking to go home.

 

 I discovered this the hard way last Monday night. We had a decent visit, but when I needed to leave, Mom was like, "What am I supposed to do now?" And then the waterworks started. I think the hardest part of this whole thing for her is having to figure out a new routine, a new way of EXISTING that's different to how she was living before. And that's just going to take time. I think that's probably the scariest part of moving for all of our loved ones with dementia. They have this carefully constructed existence that they're comfortable with, and moving pulls the rug out from under them, so to speak.

 

When I visit during daytime activities, I usually just sit with her and participate with the rest of the group. She's happy to have me there and kind of "show me off" to the other residents, I think. (You know what I mean ) I give her lots of hugs and put my arm around her shoulders as I sit next to her.

 

 Yesterday, when I was visiting, the higher-functioning residents were sitting with an activity director around the dining room table. The activity director, a very friendly, happy gal in her 30s, was telling them all jokes from a joke book. Then we each got a song book filled with lyrics from songs from the "old days" (1940s and earlier)--O Susanna, Amazing Grace, Take Me Out to the Ball Game, etc. Songs that everyone knew by heart, really. Mom has always loved to sing, and in fact, used to be a soloist for weddings, so she liked this. When I needed to leave, there was no drama or tears, just a hug and a kiss goodbye, see you soon.

 

My plan from now on is to visit every 2 days....so that means about 3 times a week, which is pretty good, but not so much that she will get into that trap of sitting and waiting for me to show up. She did A LOT of that at her old residence. There were many times I'd come to the facility, and she'd be sitting in the lobby watching out the windows for me to arrive, usually in silent tears. That's the problem with visiting too often for a lot of people, from what I've heard. Your loved one doesn't want to participate in activities because they're too worried about missing your next visit, etc. I'm trying not to let that happen at the new place (obviously they keep her far more busy than the old one did.)

 

I've also had one of my sisters and a cousin who have visited Mom and highly approved of the new place. The day my sister and cousin visited, Mom and the other residents were watching one of those "Best of Johnny Carson" DVDs as a group and laughing. This place really seems to know what people like my mom respond to best.

 

I think this whole experience has taught me a lot. One thing in particular that I believe --no matter how much we want to think that our loved ones don't need more care, by the time we finally convince ourselves that a higher level of care might be justified, our loved ones have already been floundering for a while, trying to put on a good show. And sometimes we're afraid of rocking the boat because of the pain it will cause us, but it's better for our loved one in the long run. Thirdly, it's just human nature to second guess ourselves. But we're all doing the best we can.

 

Sorry to write so much...I'm just hoping that someone else can learn from my experiences this past week!


rose_ro
Posted: Monday, January 9, 2012 2:09 PM
Joined: 12/21/2011
Posts: 2431


Wow, dms, I am sorry that you have those siblings!  Amazing chutzpah...

 

My sibs are not that bad, on the other hand - when did they really CARE about ME?  i would care about them!  This is going to be the next part of the ''journey'' and dealing with them   (I've avoided them when I realized they almost wanted me to beg for their help!)

 

Yes, my mom went in a care place just a month ago.  My father is still pretty much with it, and with her all day now.  So I am recovering a little of my life...

 

But I do a lot of the work...in picking doctors, etc..

 

A woman said to me the other day, it's not  just about the work, it's about the responsibility.

 

My mom was struggling to eat much recently, so once again, I did the work to find out how to help her.   I appreciate the people here so much for how they've helped - but come on now.  Doesn't anyone else in this ''family'' have a brain?

 

In some ways, and I don't mean to sound mean, but my father gets in the way.  Perhaps we could have worked some things out with the sibs, but my father still wants to be ''the boss.'' So the other sibs kiss his ring (so to speak), and I do a lot of work.

 

Heaven help us all!

 

On the positive side, and there is a positive side, I kind of wish I had done this before!

 

My father was not with my mom much, at times, he was working!  I wanted her to go to p/t, and it was work to get her to go to a podiatrist or beauty parlor or whatever.

 

No more work!  They wheel her down to p/t, even o/t and s/t which I am happy she's getting!

 

She also got to see the podiatrist (though I had to ask all the time to get that to happen, it's always about learning their way of doing things).  And she has had her hair done several times already!

 

My father even called at lunch to see if I wanted to come down to eat with them.  Turned out my sister was there, so it's fine for her to spend time with them.

 

My dad said it was my mother's idea to call me.  She does still think of me.

 

I'm going down in a little bit, and will have dinner there.  I straighten up her room some.  I usually put her clothes out for the aide to put on her the next morning.  Sometimes I stay as the aide helps her get ready for bed.  But my father always does.  he stays until she falls asleep. 

 

We've been eating several times in the IL area, and she is really enjoying it. It's helping her to eat more.  And every time she goes, she gets to pick out her own ice cream.  She LOVES ice cream.

 

So - not a whole lot of negatives, seems like a lot of positives - fingers crossed.

 

I wish I had done this before, too, because my mom fell.  It's a live and learn thing.  If she were over 90, maybe I would have worried about that more.  But she's still under 80 (barely).  She fell in the kitchen, broke her hip, and had two pins put in.  The recovery is so hard, how it mixes up the brain.  I would have tried to avoid that at almost any price.

 

My mom does start wanting to ''go home'' in the evening, at times.  It's usually why I go then.  I can often help her be calm.  I think it's hard on the weekends, too, because she wants to pack and ''go home''.  Not enough things to do, like p/t.  But my sister and her family visited both Saturday and Sunday.  That's great.  I'm happy for them all.  But there is a big difference between visiting and ''working'' with all the things that have to be done, even the emotional stuff they go through.


rose_ro
Posted: Monday, January 9, 2012 2:23 PM
Joined: 12/21/2011
Posts: 2431


Mom's Baby, I'm happy to read what you wrote, thanks for sharing!

 

I was wondering how you were doing...both of you..so glad she's had other visitors...

 

I am SO happy for her that she can ''show you off.'' THAT may very well be why she feels alone. (before) - It's like - she had this life with a husband, children - and what does she have to show for it.  Even the memories get taken!  But - she has you

 

  I have gone out of my way to meet everyone I could, let them know I'll be around, other family members will be there...the activity people DO know how to help, like to get to know the folks, get them involved...

 

They may be used to people NOT wanting to be involved, so if your mom shows emotions, does stuff, they will work with that...

 

You are exactly right, if they can't figure out how to go to the bathroom sometimes, how can they figure out how to re-invent their lives?  To pick up and move on?

 

This is where you can be the guide, and help her.  Keep us up to date, your words have helped me understand some things, also.

 

My one issue with this place, is that it doesn't have Mass often.  So - if my mom can't get out to Mass, we'll have to figure out what to do.  I don't want to move her now, as what you're saying points out.  It's so important for them to be able to figure out how to enjoy life.

 

But - well, there's a little more about Mass, but I'll go into it another time.

 

If she's enjoying her day, and busy, perhaps she won't feel so sad at night.  I know with my mom, she's tired from all the p/t etc she's getting.  She's so happy to be in bed and go to sleep.

 

She is not even really interested in watching TV much.

 

And we have to realize what some of those activities bring to their lives.  my mom loves the singalong, the word games, the chair exercises...


dms
Posted: Monday, January 9, 2012 7:36 PM
Joined: 12/24/2011
Posts: 40


My sister Kathy went to see Mom today for the first time today since her placement on the 3rd.. She said Mom spotted her coming and they waved to each other... Mom cried a little and just said "where have you been, I have missed you" Mom never called her by name or asked where any of the rest of the family were by name.. just in general "how are thing's.  They spent most of the morning together, went for a walk and looked thru pictures and cards that I took down when we admitted her...Kathy said her room looks good and everyone says she is doing very well, so thats good.

.

I will be going down this saturday and staying overnight until sunday evening.  It will be my first real visit and I have butterflies in my stomach,, can't wait to see her but don't know what to expect.   Today I really missed her and thought about her all day.

 

Mom's baby,,,, I am glad things are getting better for you, this is very hard isn't it.  My Mom is the same, good in the morning and sundowing and wanting to go home in the evening.  seems to be the norm with alot of them,, she also loves her 40's music, the big band era,,, "in the mood" was her most favorite song to jitterbug too.. she loved to dance and I always had Lawrence Welk and Ballroom dancing on for her and her cd's of her music for the car,, now she hates long car rides.

 

welll thats all for now

see ya later

dms


rose_ro
Posted: Monday, January 9, 2012 10:12 PM
Joined: 12/21/2011
Posts: 2431


dms, I know what you mean...you don't know what to expect, but boy - you actually get everything!  I just try to roll with things, whatever is happening, because it varies...I heard Mom was great at lunch, but then by dinner, she was cranky and not wanting to eat...I did give her some peaches around 4:30, and she ate some food (not a lot), and then more peaches and ice cream...I added cinnamon to the dessert...
dms
Posted: Tuesday, January 10, 2012 5:18 AM
Joined: 12/24/2011
Posts: 40


I am thinking we should start a private group since we all have so much in common.. this thread is getting to long... have to read how to do it

 

see ya later have to get ready for work..


rose_ro
Posted: Tuesday, January 10, 2012 5:32 AM
Joined: 12/21/2011
Posts: 2431


 

What gets me is that by mother being in her new place, other sibs can show up for some of the ''glory'' now...I probably sound like the crankiest person, but as the oldest, I have done so much for my family over the years.  When I needed them, where the heck where they?  Now they can show up for some ''glory'' and fun.

 

The most important thing is that my mother is ok.  But it will take me some time - if ever! - to recover from all the time I spend caregiving.  And still am.


rose_ro
Posted: Tuesday, January 10, 2012 5:34 AM
Joined: 12/21/2011
Posts: 2431


What happened to the edit button? there are some things I wanted to edit above

 

(''my mother'' not ''by mother'' and ''spent'' not ''spend'' - not big deals, just wondering where the ''edit'' button went, or maybe it's my computer?


jfitzm54@aol.com
Posted: Tuesday, January 10, 2012 5:56 AM
Joined: 1/6/2012
Posts: 2


Just a thought - maybe check with your mom's facility and see if they have any other residents that have priests/ministers visit. I know a local facility here has several Catholic residents that have lay ministers that bring them communion and say the rosary with them. Those Catholic traditions/sacraments can be very important/comforting even at the very end of life. The sacrament of the sick is also something you might want to consider if you haven't already. I do end of life care and have seen this be very healing for both residents and family members. You are a wonderful and caring daughter and your mom is blessed to have a such a place in your heart!
Mom's Baby
Posted: Tuesday, January 10, 2012 9:29 AM
Joined: 12/19/2011
Posts: 1176


Thanks Jim, you are totally right...I want to find someone in my diocese who can go visit Mom since it's so hard for her to get out to go to Mass these days. And it's SO important to her, always has been. I don't mind taking her, but with her using a walker PLUS the dementia, we'd have to get to the church like half an hour early just to get a close parking spot. Otherwise, what do I do? I can't drop her at the nearest entrance and then go park (we're talking some BIG churches with HUGE parking lots, some spots more than a block away from the church itself.

 

Anything ritualistic like Mass or any kind of routine that a person has held for many years is comforting to them. I know my mom still remembers everything from church well, so it probably makes her feel normal for just a little while, and I certainly want her to experience that as long as she can.

 

Rose,  I hear what you're saying about wanting to be there for your mom when she's sundowning, and that's so nice of you to help your mom at that time. I think in my situation, however, that my mom just gets upset because I'm there, and I'm a reminder of home, which then makes her even more upset and confused about where she is. The staff at her facility tell me she seems very content and has no problems when I'm not around. I just figure it's best for both of us to make sure my visits occur during the day when there are other things happening to distract her.

 

I also wanted to say I can appreciate how you all feel about your siblings. In these situations, one child seems to take the brunt of the work, that's the way it goes. And the others are usually more than happy to let that happen. I've kind of come to peace with it though. My brother is terribly uncomfortable around my mom, he doesn't know what to say or do. But, he does help me a lot when it comes to taking care of my parents' house (we still own it, still need to clean it out). So, I figure, you can't make anyone do something they don't want to do. It wouldn't be good for him or my mom. BUT--I can let him help me in the best way he knows how. And if that's by mowing the yard, fixing the furnace, patching the roof.....I'll take it!

 

As far as starting our own thread.... would that work if we each added one another as a "Connection?" I haven't looked into it much, but I was thinking it works similarly to Facebook.


rose_ro
Posted: Tuesday, January 10, 2012 11:12 AM
Joined: 12/21/2011
Posts: 2431


jfitzm54@aol.com wrote:
Just a thought - maybe check with your mom's facility and see if they have any other residents that have priests/ministers visit. I know a local facility here has several Catholic residents that have lay ministers that bring them communion and say the rosary with them. Those Catholic traditions/sacraments can be very important/comforting even at the very end of life. The sacrament of the sick is also something you might want to consider if you haven't already. I do end of life care and have seen this be very healing for both residents and family members. You are a wonderful and caring daughter and your mom is blessed to have a such a place in your heart!

  Oh, when you do the quote, the person's ''name'' shows up

 

Sacrament of the Sick is a wonderful thing.

 

There should be someone who visits these places, even if it's a chaplain of another denomination.  they should be able to help you, or anyone else there.

 

 


rose_ro
Posted: Tuesday, January 10, 2012 11:14 AM
Joined: 12/21/2011
Posts: 2431


Mom's Baby, oh I understand what you're saying.  I wasn't saying you should be there at that time.  I meant, it might be easier at night because you have been there during the day.

 

My dad is with her during the day, otherwise I would be there more.

 

And my mom likes to get into bed early

 

But most of all, I have lived with them, so it's a nice routine for her to see me - and me see her - at the end of the day.  and I talk to her in the morning.


Mom's Baby
Posted: Tuesday, January 10, 2012 11:21 AM
Joined: 12/19/2011
Posts: 1176


Oh, no offense whatsoever, Rose.  I just figured I'd explain where I was coming from. I'm a talker, if you can't tell.

 

It is hard for me to only visit 3 times a week....I feel guilty if I don't see Mom every day because that was our routine since my dad died. I know she is well cared for in this facility, but it's still difficult to think that she might be scared or lonely. I think this is one of those times when I just have to remind myself that:

 

1) It's the disease that's affecting her quality of life, not me.

2) She would be absolutely NOT want me to sacrifice my life and independence.

 

Easier said than done.


rose_ro
Posted: Tuesday, January 10, 2012 11:23 AM
Joined: 12/21/2011
Posts: 2431


I wish I could have edited that post above!  Oh well.

 

Mom's Baby, you're right.  I just wish I could have people support me, instead of playing these other crazy games.  My sister morphed into some kind of ''Mother Superior'' in the last years, where she's decided she's the boss of everyone.  I'm sure she doesn't see things that way.   But if I did things she does, people would be ranting about my being ''bossy.''

 

I have been fighting this urge to email her and others in the family about things that I have been too preoccuped with helping Mom to do before.

 

When I was in her house last year, I couldn't believe the photos she had on the wall of our parents' wedding and honeymoon.  When did she TAKE those?!  And if I had them, she'd probably steal them from me! 

 

I agree with you about getting to Mass.  It's going to be hard for my mom, too, to get to a church for Mass.  It's why I really do want her to move, at some point, to a Catholic place.  This place doesn't have Mass on Sundays, and the other place not only has it on Sunday, but other days.

 

it's not the only thing that matters, but it would add a lot to her life.  AND I think that she would interact with other people with that in common.

 

I just have to learn to slow down.  I've always been someone who WANTS TO GET THINGS DONE.  

 

Also, here's my problem if she does go back to our church. Will that upset her?  Will she want to ''go home'' more?  She is not a ''norma'' older person who just wants to get out, and then returns.  It will stir up all kinds of things affected by her dementia.

 

 


rose_ro
Posted: Tuesday, January 10, 2012 11:56 AM
Joined: 12/21/2011
Posts: 2431


Mom's Baby wrote:

Oh, no offense whatsoever, Rose.  I just figured I'd explain where I was coming from. I'm a talker, if you can't tell.  

 

It is hard for me to only visit 3 times a week....I feel guilty if I don't see Mom every day because that was our routine since my dad died. I know she is well cared for in this facility, but it's still difficult to think that she might be scared or lonely. I think this is one of those times when I just have to remind myself that:

 

1) It's the disease that's affecting her quality of life, not me.

2) She would be absolutely NOT want me to sacrifice my life and independence.

 

Easier said than done.


  Did she spend any time alone, after your dad passed away?

 

I have found that when I brought something ''from home,'' instead of comforting her, it makes her want to go home!  It makes sense, but it's hard.  So I know what you mean.

 

How did I miss this reply?  I didn't see it before, I think.!

 

glitches or me missing it.


Mom's Baby
Posted: Tuesday, January 10, 2012 1:20 PM
Joined: 12/19/2011
Posts: 1176


Rose, yes, Mom was home for 3 months after my dad died, alone except for a caregiver I hired to come in every day. That was before I really got a grip on the fact Mom was WAY past being able to ever be alone for an extended period of time. When we moved Mom to the IL/ALF, we didn't take any of her furniture because we weren't sure of the "fit" with this particular facility. They had nice furnished rooms, so it wasn't a big issue. I did take a few photos and things from her home, and of course, dishes, etc.

 

I am in the process of packing up all her stuff from the IL/ALF now that she's at the memory care place, and doing so has really helped me feel even better about Mom's new living arrangements. I am packing up glasses, dishes, utensils, etc. that she never used once in 18 months of living there. She would make a piece of toast and just put it right on the countertop or table, getting crumbs everywhere, and then never wiping them up. I'd try to remind her to use a saucer or plate, but to no avail. And this, from a woman who preached cleanliness and the importance of cleaning up crumbs, etc after you'd used the kitchen to her kids for years and years! I'm also packing up the photos I'd brought from home. She'd put those away in a drawer because they bothered her, I think.

 

 


rose_ro
Posted: Tuesday, January 10, 2012 1:36 PM
Joined: 12/21/2011
Posts: 2431


Lol,. you know that's funny.  I'm cleaning up here, too and feeling better.  i wish I could speed clean, so everything would be done so fast!

 

I just realize how much she had changed, as I think you're saying.  how much she depended on me.  I needed her, too, around the surgeries, but I am not sure how much help I was to her at times.

 

She was driving two years ago to the bank.  I can't believe some of the notes she wrote me two years.  reading them, it explains why I didn't pick up on things,.  She had so much insight, still, so much ability.  

 

But I did so much for her, as time went on, and others relied on me too much.

 

Like- I did it all.  And I am so burnt out!

 

I thought I'd be less burnt out, by now!  at least a little less.


dms
Posted: Wednesday, January 11, 2012 4:58 AM
Joined: 12/24/2011
Posts: 40


Yes lets do the connections thing
NoPeeps
Posted: Wednesday, January 11, 2012 7:22 AM
Joined: 12/15/2011
Posts: 281


Rose Ro, I have the same problem with my Mom.  She does not want ANYTHING from home, because she thinks that means she is accepting her new living arrangements. 

 

I cannot bring pictures from home, or any of the things that are recommended...because then she cries to go home.  And she has been in her NH for 5 months.  When does it get better?


SandraW
Posted: Friday, January 13, 2012 11:18 AM
Joined: 12/29/2011
Posts: 21


Thank rose_ro, I would love to be friends with everyone on this site.

 

My cousin and I went to look at three ALZ units and I put deposit down on one, but still very uncertain.  I talked to several people and have come to the conclusion that where Mother is currently is the best place.  Here is the reasoning and I would like some feedback from anyone, please!

 

Mom cannot move about without assistance but still can get out of a chair or out of bed and attempt to walk.  I have round the clock sitters and everyone has said that any place will only do periodic checks so if she gets up and falls 2 min after the check she will be laying there for possibly as much as an hour.  So where ever she lives we will keep the sitter until she no longer moves about.

 

As everyone knows cost becomes a factor when there is no insurance so I have talked to the facility personnel about moving back to the independent side and possibly getting a less expensive apartment thus saving rent and without having to pay for medication dispensing will save approximately 12t a year.

 

I have come up with one other option before we make this move, to buy a home right across the street from me which has a large master suite and connected bath.  My son, wife and two children ages 8 and 5 want to buy the home and have Mom live there until she needs to move to a nursing home. 

 

I go to Mother's apartment everyday and have for the last 6 years, so keeping the some of the caregivers will continue, but possibly since I will be so near and son and wife want to help we could elimanate the 11-7 shift.

 


Mom's Baby
Posted: Friday, January 13, 2012 2:27 PM
Joined: 12/19/2011
Posts: 1176


SandraW, I think you'll get more feedback if you start a new post rather than tack onto this old one. Just a thought.

 

My two cents---going to ILF when your Mom cannot move unless she's assisted sounds like a bad idea to me. You're going from a situation with more care to a situation with less care. At what stage of dementia is your mom?  How are you handling the burden of her care now? Is it weighing on you? Are you able to do the things you want to do in life? How is it affecting your family?  I don't intend to be rude....I know you're trying to do what you feel is best AND will conserve money. I'm right there with you.

 

I'm assuming you read my posts on this thread about moving my mom to a memory care  unit. The place where I moved her has a max of 16 residents. There are at least 3-4 nurses/aides on duty, and the arrangement of the building includes a large living/dining/kitchen area that's completely open so the aides can see the residents pretty much at all times. My mom is a fall risk too, so there is an alarm attached to her back that lets them know if she tries to get up unassisted.

 

I don't know if there are any places like that in your area, but it has been a godsend for us. It costs around $5,000 a month, but that includes medication distribution, and they take Medicaid after the person has been a resident for a year. My mom is really thriving with all the extra attention. I've also been impressed with how they handle the "worse" patients...very caring and patient. There's one resident who likes to pace quite a bit. The aides walk around with her wherever she wants to go, holding onto her to make sure she doesn't fall. They really are great.

 

My mom didn't have much money either, and I was trying really hard to make it last by keeping her in an ILF and visiting every day. I ran myself ragged and for what? She was bored, lonely and confused. She's getting far better care now than I could have ever provided.


SandraW
Posted: Saturday, January 14, 2012 12:55 PM
Joined: 12/29/2011
Posts: 21


Thank you for the suggetion of a new post.  I only wish this area had a place as you describe your Mother is in.  We seem to be behind the times with better ideas for ALZ.
 
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