It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-06-2012, 10:33 AM   #1
Newbie
(female)
 
Join Date: Jan 2012
Location: Lincoln, Nebraska, USA
Posts: 4
LSVM HB User
Mom in memory care... did I do the right thing?

Hi everyone, this is my first post. I've been reading through old posts, and they've been a great resource for me.

My mom was diagnosed with dementia, non-specified, Alzheimer's Type back in March 2009. By the time she was diagnosed, she was already Stage 4, maybe Stage 5. My dad was caring for her at home...she was still able to do most of her daily routine. Dad passed in April 2010, and I knew Mom would not be able to live alone, so I moved her to a retirement/assisted living facility in the city where I live, about 50 miles from the small town where my parents raised me and my 4 much older siblings.

Over the 16 months of so that she lived in that facility, she gradually got used to it, but she was lower functioning mentally than the other residents, the vast majority of which did not have dementia. I knew she'd need to move at some point in the near future. She was exhibiting all the signs of Stage 5 by that point and a couple of Stage 6.She rarely uses my name anymore, but she knows I'm her daughter. She seems to remember all her own kids, but she has totally forgotten her grandkids for the most part.

Well, that decision was taken out of my hands when Mom fell and broke her hip by slipping on a puddle of her own urine in her bathroom on December 9. She has done well physically with surgery and rehab. She was pretty confused in the rehab hospital ...thinking she lived there now, forgetting she'd broken her hip at all, never remembering that I'd just visited the day before, thinking her room was "upstairs" (this is a one-floor facility).

It was clear she couldn't go back to the facility where she'd been living because she needed supervision at all times, and they did not offer that. I found a small memory care facility (16 residents max) that's also close to my house and took her there a week ago today.

Well, she's one of the highest functioning residents there. There are Stage 7 people who cry out occasionally or just don't speak at all. There are others who pace, some who carry baby dolls, etc. Mom hates it....asks to go home, says she doesn't know what to do with herself, etc. It's absolutely awful, and it makes me doubt putting her there. There are a few residents at her same level, but of course she hasn't gotten to know them yet. I was just there last night and she cried when I left. She was so confused, thinking it was morning when it was 7:30 at night....

Did I do the right thing? I'm so conflicted...I hate seeing her upset. But I didn't know what else to do. I wanted her to have more one-on-one attention, and to live in a facility where she could stay for the rest of her life. Another important consideration--this facility will accept Medicaid after a year of private pay, and we have just about enough to cover that.

Just looking for some reassurance. Thank you!

 
Sponsors Lightbulb
   
Old 01-06-2012, 06:51 PM   #2
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,186
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Mom in memory care... did I do the right thing?

I am here to reassure you that you have made the right decision. Mom was barely hanging on in Assisted Living before her hip fracture and rehab. That experience took her cognition to a lower level than before so she could not go back to where she was.

Yes, there are high and low functioning residents in locked units. But the high functioning is not normal. They do not know how to socialize and entertain themselves. They are prone to complain and not know where they are or what they should be doing. They will consistently tell you that they want to go "home" when in fact what they want is for the fog of dementia to clear from their mind. This remains wherever they are, and in a locked unit you know they are safe and cared for. Yes, her inability adjust makes you second guess yourself but the inability to adjust in and of itself is a sign that she needs to be where she is. Yes, she is going to cry because she is confused and frustrated, but moving her again is not going to make that any better.

I was in Mom's unit today. Mom is one that barely talks but paces around all day with her baby doll, blanket, book, or whatever else she can carry with her. When she went in she was higher functioning as well.... and filled with angst and aggressiveness because she wanted to go home. Now she is chemically content with the right anti psychotic medications. With the assistance of Hospice she will remain there until her last day. It has been her home for the last 2.5 years. Right now we have three higher functioning residents that are relatively new. One has been there a couple of months and she rarely gets upset any more. She started out wandering, crying, and asking to go home but with some attention she has settled in. Another has been there less than 2 weeks. He is constantly wanting to go home, gets upset, and says he doesn't belong there. He can even become hostile. He is at his worst when his wife is there and other times he might settle in and be ok for a while. Then he goes back to his wanting to go home. He is better than he was the first week. We also have one that is new today and she was pitiful. "Why am I here?, How can I get out?, threats, tears... but I do know that with help she will also adjust. It is what happens when you have to move them in the later stages.

There are a few suggestions that might help. Please don't go see her consistently every day. Let her get into her new routine and not sit waiting for you to show up. Ask the care givers to give her something to do. Let her help with folding, setting tables, making a cake... anything that will help her feel useful and productive. Make sure she participates in activities and entertainment. She will probably say no because she needs to go home but once there she might just enjoy it. Keep her busy please! If she doesn't settle down in a couple of weeks please ask her doctor for a medication to control her emotional distress. It might be advantageous to ask for a referral to a good geriatric psychiatrist that specializes in dementia behavior. Please do not put her on Ativan (Lorazepam) or Xanax (Alprazolam). These just don't do what you want to them to do... I can tell you this from experience. Many doctor's will want to start with small dosages of these meds as needed. Let Mom get all upset, give them an anti-anxiety medication with a sedative side effect, put them to sleep, and have them wake up hyped up with the same emotions they had before. Eventually they will end up on other types of a-typical anti-psychotics which will work but you have wasted smiles. That is why I suggested the geriatric psychiatrist with dementia specialties.

Your Mom is in emotional pain but moving her again will not cure it. Time and activity may make it better. When combined with the right medication Mom can be as content as my Mom is Also know that you can call in Hospice to assist with Mom's management.. even if she is in a facility. That is a way to not have to move Mom again. My Mom is already on Hospice and has been since July... she was reassessed yesterday for another 6 month!

I do hope you and your Mom will find the contentment that you seek but please know that you have not made a horrible decision

Love, deb

 
The Following User Says Thank You to Gabriel For This Useful Post:
LSVM (01-13-2012)
Old 01-06-2012, 07:29 PM   #3
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: highland park, il 60035
Posts: 2,484
debbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB User
Re: Mom in memory care... did I do the right thing?

you made the right decision. its a horrible disease and she needs to be taken care of 24\7 its not easy but take care of yourself first if you can and everything will fall into place. take deep breaths and keep posting, we are all here for you. giving you hugs.

 
Old 01-06-2012, 11:06 PM   #4
Newbie
(female)
 
Join Date: Jan 2012
Location: Lincoln, Nebraska, USA
Posts: 4
LSVM HB User
Re: Mom in memory care... did I do the right thing?

Thanks so much to you both for your replies, Deb and Debbie. I think my head knows the memory care facility is best for Mom but my heart breaks when I see her upset. The residents with more advanced dementia will sometimes make loud yelling noises, pace, etc. and Mom will give me this look like "What the heck is wrong with them?!" And of course the requests to go home and telling me she doesn't know what she's supposed to do, that she's just "sitting there all day"...those are hard to hear. Even though I know they're not true...she just can't remember what she's done from one hour to the next.

She's getting physical therapy right now, and the memory care staff knows that it's important to make her feel needed. I'm certain they're not just letting her sit around. The first day she was there, she was sobbing, saying I put her there to die. (It was HORRIBLE.) They swooped in and took over, with kind voices, friendly faces. The administrator told her, "No, your daughter didn't put you here, Dr. Smith said you need to be here because of your hip. You're going to help us in the kitchen and the laundry and show us how well you can take care of yourself!" (They knew my mom had worked in a hospital laundry before marrying my dad, raising 5 kids and helping on a farm for the 57 years of her marriage.) One of the staff members approached Mom with a big basket of clean laundry and said, "Ruth, I don't know how I'm ever going to get all this laundry folded." Through her tears, Mom said, "Oh that's not so bad..." and reached to help her fold it.

I know you're right about not visiting her too much. I'm fairly certain she DOES sit and wait for me to show up. Since last Friday, I've been there 4 times--probably way too many. I know she needs to learn to trust her caregivers and settle into some sort of new routine. I feel that she is just so upset because she had settled into a "new normal" in the assisted living place where she was for the 16 months before breaking her hip. When I moved her there in July 2010, she hated it, wanted to go home, said all the same things she's saying about the memory care place now. Now, she's all discombobulated, the careful routine that had gotten her by these past months is no more. She has to figure out a new normal all over again.

Seeing her at her old facility where hardly anyone had dementia was difficult too, just in a different way. It sucked to see other elderly people playing cards, socializing, Wii bowling, etc. when my mom wanted to do those things but just couldn't anymore. Her dementia just wouldn't let her fit in. It was sad. I found an Activities of Daily Living checklist, and my mom really couldn't do any of them. She can't use a washer and dryer. She can make a bed, but doesn't clean anything else or seem to know how to do so. She never throws anything away, just sets it aside. Then she says, "I don't know who that magazine belongs to, someone else must have put it there." She can't turn the channel on a TV. She was fixing 4 pieces of toast and eating one, while leaving the other 3 scattered around her assisted living apartment. No way could she remember to take her 4 medications without help. (She is on an anti-depressant that helped tremendously after the initial move to assisted living.)

Anyway, I'm just rambling now. Thanks so much for reassuring me. It's hard, so hard. I just want her to be happy.... And I have to realize that's not in my control.

 
Old 01-09-2012, 10:54 PM   #5
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Mom in memory care... did I do the right thing?

Yes you did the right thing. She needs memory care now in a locked unit. Given stage 6, it is a must. Well, the patients may not be at the same level and everyone is different.
Certainly she would not like the sicker people there.
If you leave her alone for a few weeks with the new caregivers, she will get used to them and maybe she will get to know this place and blend in.

Sometimes the person is like a kid going to the kidergarten. Mom is there so the kid cries in school. Once Mom leaves, the kid enjoys the school and peers. You are the Mom now and your Mom is the kid now.

Give her some time. It took my FIL about 3 months to get used to it. The difference is he likes the home because he wanted to work there... Now he knows the caregivers and they are nice to him.

Please know that you did the right thing. Assisted living is not for the person in later stage Alzheimer's.

Hugs,
Nina

 
The Following User Says Thank You to ninamarc For This Useful Post:
LSVM (01-13-2012)
Old 01-10-2012, 02:44 AM   #6
Senior Member
(female)
 
Join Date: Jun 2008
Posts: 276
cejayb HB Usercejayb HB Usercejayb HB Usercejayb HB Usercejayb HB Usercejayb HB User
Re: Mom in memory care... did I do the right thing?

When mum moved into a dementia unit I was asked not to visit for at least a week. That was hard but it did allow mum to settle and it allowed me to accept what I knew was her reality - but didn't want to get my head round!! Even though you see the deterioration and know what has to be done that glimmer of hope remains. I let that go. Made sure that when we went out she saw things that she found fascinating [e.g gardens, children and animals] and just enjoyed her and her world. You have done the right , and only, thing.

 
The following user gives a hug of support to cejayb:
Keysey (01-10-2012)
The Following User Says Thank You to cejayb For This Useful Post:
LSVM (01-13-2012)
Old 01-10-2012, 09:53 AM   #7
Registered User
(female)
 
Join Date: Dec 2011
Location: Bedminster, NJ
Posts: 142
Suzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB User
Re: Mom in memory care... did I do the right thing?

YES, you did the right thing.

That does not mean it is easy or that all the problems are solved.

With Alzheimer's / Dementia, I have come to realize that it is more a matter of choosing from among sad and unsatisfying solutions and that even the RIGHT choice will not necessarily give you that confident, happy feeling you usually get when you make a good decision.

But have confidence that YES, you did the right thing.

 
Old 01-10-2012, 05:50 PM   #8
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,186
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Mom in memory care... did I do the right thing?

LSVM... yep sounds like my Mom. Had a difficult time adjusting to AL and never did really fit in because she didn't have the ability to socialize and do the things that others did. She too ask about those sick people that were in the locked unit when she first arrive and she wanted to go home. She also told me I had "left her there to die". She swore she did nothing all day when I know she did. Yep, she wanted to go home home home home home...... She was going to call "Three Men and a Truck" and have them move her home! Once she was settle in, it has been contentment since... and will be until the end with the help of Hospice. It's difficult in the beginning but it's a blessing to know this is it! Just takes time to get to that point.

I had to chuckle today. The facility is on quarantine because of a rampant virus and they are keeping all the residents in their rooms until it abates. Well, all except Mom!! When the Hospice Social Worker called me today he said Mom was sitting in her usual place in the dining room, happy as a clam, with every other resident in their room They so love their routine!!

Love, deb

 
The Following User Says Thank You to Gabriel For This Useful Post:
LSVM (01-13-2012)
Old 01-11-2012, 04:39 PM   #9
Newbie
(female)
 
Join Date: Jan 2012
Location: Lincoln, Nebraska, USA
Posts: 4
LSVM HB User
Re: Mom in memory care... did I do the right thing?

Thank you so much, to everyone who replied to my post. I read it now and see how upset I really was. Things have really calmed down over this past week. Mom seems to be adjusting well, at least as far as I can tell. I've learned a lot about when to time my visits (night = not good). I can also see from my visits that she's getting more interaction and involvement than she has had in ages.

I also had a call today from her facility asking me to bring in some incontinence supplies---that's a new one. She wasn't incontinent, at least not to my knowledge, before her hip break. So it looks like we're fully into Stage 6 now. She's only incontinent at night now but I'm sure full incontinence will be upon us soon.

I've been really pleased with the memory care facility and its approach to care. They really seem to know what they're doing, and I'm positive I made the right choice.

Thank you all again! I do so appreciate it!

 
The following user gives a hug of support to LSVM:
ninamarc (01-11-2012)
Old 01-11-2012, 07:16 PM   #10
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,186
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Mom in memory care... did I do the right thing?

It just takes time for US to adjust to our loved ones being in a memory unit. Yep we have to adjust just like our loved ones do. I totally agree with you that Mom got a lot more one on one in Memory Care then she did in AL. It does take a week or so for them to calm down. It's hard on us to watch but it is necessary.

We had a new resident in the last few weeks. After the first few days his wife was second guessing and finally told me she was "taking him home". I reminded her of WHY he was there in the first place and place give it another week. Report today... he's doing great! We just have to hang on and let it happen.

Night time incontinence is usually the first.... and one more validation that you have made the right decision! That's where Mom is and has been for a LONG time. A good Memory care unit will use a toileting schedule for the resident. Mom is taken several times a day. She will go when she sits on the toilet. It is obvious that she waits until then even though she can't go by herself. I do use briefs with her full time. It's just easier on her and there if there is an accident. She only uses a couple day so it's not bad!

Love, deb

 
The Following User Says Thank You to Gabriel For This Useful Post:
LSVM (01-13-2012)
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Appt with memory clinic craftlady Alzheimer's Disease & Dementia 9 06-02-2008 04:08 PM
HELP! Phone for Mother with short-term memory problems?! maymay123 Alzheimer's Disease & Dementia 11 05-18-2008 08:36 AM
Memory loss/Inability to draw a clock jinglebts Alzheimer's Disease & Dementia 6 02-17-2008 03:13 PM
I am 19, and my memory is slowly getting worse. MrZeely Alzheimer's Disease & Dementia 13 09-16-2007 02:10 PM
What other conditions can cause memory problems? kdmari Alzheimer's Disease & Dementia 10 08-08-2007 07:25 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:01 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!