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Old 07-27-2011, 04:16 PM   #1
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Moving Mom and Dad from Independent to Locked specialty care

Hi, all: This is my first post, but I've been lurking for a while. I have read Deb's story and there are many similarities to mine. It started with my Mom alerting me that Dad was confused. She called one morning and sounded almost in tears (she's not a cryer) so I rushed over there and took him to the ER. Well, as you can guess, he hadn't had a stroke! Duh!

Long story short, Mom thought that since dad had Alzheimer's, it'd be a good idea for them to move from their home to Independent Living, so we made the move about 3 months ago. Dad took it really well, but it put Mom in a tailspin because, guess what?! She has dementia too!! The first 2 weeks they were there my brother and I were trying to handle everything... we were CLUELESS! Then we started having a sitter come in 4 hours a day, then 6, then 8, then 12 and when my Mom started wandering, 24/7.

Now that these well-meaning but untrained sitters have TWO people with dementia to deal with, and my Mom is fairly unpredictable, it is obviously getting out of control. So as providence would have it, the rarest of situations has arisen: the locked memory unit at their retirement community not only has 2 rooms available at the same time, they are right next to each other! So, we're moving them next Tuesday. (They have been married 56 years and obviously get on each other's nerves sometimes so will need their own spaces should they not be experiencing marital bliss all of the time). We've been alluding to the move, but when I got a little too specific with my Mom about the new setup, she got upset so I backed off.

Now my brother and I are trying to figure out how and when to tell them... My Dad is farther along the path than Mom and he's quite easy going (a departure from the Dad we knew growing up) so as long as she's calm, he's calm. However, Mom is being very feisty and although she's started to have some fairly good days lately, we are dreading her reaction. Therefore, we are concerned about telling them in advance. After reading some of the posts on this subject, I'm leaning towards the fiblet of the apartment needs repairs so they're staying in this new area in the meanwhile. Sigh. This really stinks.

Your new pal,
Sarah

 
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Old 07-27-2011, 05:47 PM   #2
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Re: Moving Mom and Dad from Independent to Locked specialty care

Hello & welcome! Yes, it's horrible, isn't it! There is no easy way really. We went through the same thing earlier this year & it was rough for everyone during the move & for about a month following, but now they are both as happy as they can be under the circumstances & are being well cared for. Safety becomes a big issue too- at a certain point they need to be protected from themselves.

We just kept repeating to them that we only had their best interests at heart & wanted life to be easier for them- cooked meals, stable temperature & assistance with showers etc. It took Dad much longer to settle than Mum- his vascular dementia wasn't as advanced as her Alzheimers. He is now happy & enjoying himself in his own way, but it took a few weeks. He has put on weight too & looks much better for it. This is the first winter when they haven't got sick- so remind yourself that there are a lot of plusses for them in moving into care & also peace of mind for you!

We just gradually referred to 'the lovely place' where you can be cared for, over & over- but they would forget anyway, and on the day it still seemed a shock to them. The long term picture for them is better now though!
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Old 07-27-2011, 05:54 PM   #3
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Re: Moving Mom and Dad from Independent to Locked specialty care

Well hello Sarah Thanks for feeling comfortable enough to share your story here. I remember the first time I posted 2 (or was it 3?) years ago. I so appreciated those intial responses.

First of all, I am so sorry for what you and your family are going through. Oh - my - gosh - to have both parents although throughout my journey, we have wondered more than once about our mother's cognitive state (yup - we've had her tested too).

It's just so much to face isn't it?? I imagine right now you might be running on adrenaline. I know there were phases when I was definitely running on adrenaline......or shock.......or something!!?? Caffeine probably

I know others will join in soon, but I would opt for the best story you can come up with for your folk's move. Just to make it easier on them -- and easier on you! Because goodness knows.......none of this is easy.

Take very good care as you walk this road. Post whenever you feel the need! There is great support here

 
Old 07-27-2011, 06:56 PM   #4
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Re: Moving Mom and Dad from Independent to Locked specialty care

HELLO new pal, Sarah!

Well...welcome to our world. Sigh. THe same thing happened with my mom...we needed to move her from her independent apt. to the asst living building right next door with a locked memory unit.

We didn't tell her. Even if we had she might have forgotten and we would have had to tell her again and again...and she would have fought and cried..so we just moved her. I picked her up on a saturday morning and after we left, my son and his wife and my husband swooped in and moved her lock stock and barrel to the new place. When I brought her back from shopping we went to the new place. They had it set up very much like her old place. It took a lot of timing and work but we did it. She was shocked and we sat with her awhile and then we left. They will adjust .. it will take time. It won't happen overnight but you may find, like many of us here have, that they, especially your mom, might find it more comforting to be in a more confined, (safe) structured environment. The move isn't easy but it has to be done and no way you do it is going to be easy. And I am all for fiblets! Tell her termites have taken over the place! Tell her they are tearing it down and rebuilding it all with new everything and she can go back when it is all done. Tell her anything!

But I applaud you and your brother for stepping up and getting this done. Many just bury their heads in the sand. Your parents raised two great kids.

Love, Meg

 
Old 07-27-2011, 08:38 PM   #5
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Re: Moving Mom and Dad from Independent to Locked specialty care

Sarah, I read your story and thought I was reading my own! When one parent is diagnosed it is difficult but when you get slammed with the second one while trying to wrap your hear around the first. Man-O-Man... it will set you into a tail spin.

We tried AL first and that just didn't work. On top of all the other transitional and adjustment crisis, you have the two of them tag teaming you. We tried the sitter for a while and that just didn't work. Yep, it was Mom going out the front door and Dad going out the back that lead to the need for the locked unit. At first the facility tried to move Dad and leave Mom in AL and that is what make her totally flip on up. To death do us part... and we ain't dead! I wish I knew how many times I heard that.

That is when I brought them here to the locked unit. I didn't tell them one thing. Mom went off for a day with the grand daughters and Dad went to the locked unit for a day of respite. When we picked them up, we put them in the car and we were on the move. The less you have to explain the better. When Mom ask where we were going I told her we were going to a special place where she and Dad could be together until death parted them. She was happy with that answer. You take what you can that will satisfy her and use that... whatever it is. Just don't spend a lot of time preparing her or explaining to her. She won't remember if she does get it. You will just be beating your head against the wall. Less is absolutely more.

Meg is right, they are usually smaller units with more one on one care. The activities are geared to their level and there are constant reminders, redirection, and understanding that is not always present in AL. Dad loved it. He though the caregivers were "his girls". My Dad was like yours is... a little more laid back and easy to deal with. He was happy anywhere if Mom was happy. The problem was that Mom was rarely happy. Honestly the first few weeks in the locked unit were not pretty. Mom kept Dad in an uproar wanting to go home. I finally made the difficult decision to send Mom to a very good Senior Behavioral Med Unit to have her medications adjusted. I know she was miserable and I didn't want her that way. They did a great job. She came out as functional as she could be yet very content. Since that time the locked unit has been a god send.... since Mom is my wanderer. At one point we did have to put Mom and Dad in separate rooms but they were free to be in one room when they were not interacting with difficulty. We left their double bed in Mom's room. Eventually they were both staying in the same room most of the time so we gave up the second room. We lost Dad March 2010... and Mom has very little awareness that he is not still "napping". It has been a long journey but not all of it was bad. Once life settles in, even if it takes chemical contentment, there are smiles and moments of joy that carry you through.

I am so glad you decided to post. I hate you needed to be here but glad you finally let us know your story. Glad I am not the only double whammy daughter! Just keep typing, venting, asking questions, and hopefully you will find support, tips, and answers here! Welcome

Love, deb

 
Old 07-27-2011, 09:44 PM   #6
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Re: Moving Mom and Dad from Independent to Locked specialty care

Thank you all so much for responding so quickly! And Deb, I love you calling it a "double whammy"! That made me laugh! So how do you go about finding a Senior Medical .. I forgot what you called it.... where your mother had her meds regulated? I feel so bad because she's recently had more good days than bad, but here we are, about to totally disrupt their lives again. It's like when you take your infant to the pediatrician for vaccines, and they are just so happy and looking at you with love in their eyes, but you know what's coming for them and you feel rotten!

My Mom had a horrible time when they first moved to independent living... she was hallucinating, and hearing things in the walls, so the psych that comes to the facility every month prescribed a low dose of seroquel and titrating her up on namenda. Well, even with that, she still was desperately unhappy. then when the sitters started coming and staying longer and longer, she was feeling better about the facility, but didn't like having strangers in her home "taking over" as she put it. Then she started getting used to the sitters, but was also feeling very dizzy. So the psych said to take her off everything for a couple of days and have her take just her thyroid pill and the lexapro she'd been taking for about 6 months. so now she seems a bit more stable, but Tuesday we're going to uproot her again. Ugh. A lot of activity for just 3 months!

Anyway, I would love to have a place where professionals could help to get her feeling better. I saw another one of your posts Deb where you talked about a doctor making the analogy of withholding pain meds for physical pain... you wouldn't do that, so using meds to help with emotional pain is just as legitimate. I agree wholeheartedly!

Yeah, the more I think about it, the better I like the termite idea. My brother and I agreed not to say anything about the move so we're hoping they'll forget about that and we can tell them the fiblet to explain it all.

You all are such a great resource! I've read all sorts of books, but there's nothing like hearing from personal experience and being able to talk in specifics about my situation. Thank you, thank you, thank you!

Sarah

 
Old 07-28-2011, 07:54 AM   #7
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Re: Moving Mom and Dad from Independent to Locked specialty care

Quote:
Originally Posted by SandwichLady View Post

Now my brother and I are trying to figure out how and when to tell them... My Dad is farther along the path than Mom and he's quite easy going (a departure from the Dad we knew growing up) so as long as she's calm, he's calm. However, Mom is being very feisty and although she's started to have some fairly good days lately, we are dreading her reaction. Therefore, we are concerned about telling them in advance. After reading some of the posts on this subject, I'm leaning towards the fiblet of the apartment needs repairs so they're staying in this new area in the meanwhile. Sigh. This really stinks.

Your new pal,
Sarah
Sarah,

I am glad you have the rooms for your parents. I was so happy when there was space for my FIL last summer! We waited for 9 months!!
This is good indeed. My FIL was very bad in his memory so we were able to trick him that he was coming to "work with my husband". It is not true but this new home is his big toyland and he loves it and he still thinks he is working!! He also gets to have peers and ladies because he is a widower.

It is indeed hard for your Mom to understand why she needs to give up her furniture and go to this locked unit. Someone told me sometimes one has to wait until the person forgets more and does not care like your Dad.

I don't know how she can be tricked, but you sure can tell her your Dad needs this for sure. It is better for people who have lost more memory.
Or you can tell her this is not permanent and she needs to try.

I think you can also tell her, oh, Mom, this is the only space in this place. No space for the independent ones and etc. Come up with an excuse and gently guide her.
Ask her what she would like to pack and bring. Help her to get used to it. Get her to know the staff and directors so she may like them better...

It will take 1 to 3 months for them to get used to it.

Good luck,
Nina

Last edited by ninamarc; 07-28-2011 at 07:56 AM.

 
Old 07-28-2011, 10:36 AM   #8
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Re: Moving Mom and Dad from Independent to Locked specialty care

Sarah... That is just what it is when you have two at once... a double whammy. You think.. oh well I have one why not two but when they are together it increases the problems exponentially. One plus one is a heck of a lot more than two!!

The Senior Behavioral Med Unit was recommended by a wonderful lady that is my Alzheimer's guru. She was her father's caregiver and has make it her life passion. She knows all the local benefits. Ask those in your area that would know. Start by checking with your local Alzheimer's Association. Check with your facility social worker or the hospital social worker. Ask for a psych unit that specializes in geriatric dementia behavior modification. These are not your run of the mill psych units that treat everything. Ours is very small and tucked away in the back section of an outlying hospital but it is a gem!

I truly believe what the geriatric psychiatrist said to me that day. It was my turning point in taking care of Mom's emotional health. I do feel that it is just as important as physical health. The anxiety, fear, and stress that they feel is detrimental to their physical health. If we can take that away, even chemically, they have to be better off. My Mom is "chemically content" and that makes life better for us both. I have heard so many say it is unfair to "medicate" the elderly. In my logic it is unfair to let them remain in a state of emotional pain!

You can also look for a geriatric psychiatrist that specializes in dementia behavior. It is possible that she could be treated on an outpatient basis to prevent the need for inpatient care that I ran head long into. From my experience, ativan and xanax are the last two medications that need to be used. These create the very problems we want to avoid. After too much experience it was on both my parents medical records that they could not take it. Allergic to it? No... but when they ask about allergies I just said they can't take the two meds hehe

I found the namenda and aricept noneffective at best and creating more problems than they were worth. Mom was better without them. In my logic, why would you want to keep your loved one at a place where they were emotionally distraught? The mid stages for Mom were a nightmare. She is further along now but so much more content... and contentment is what we strive for in this disease.

Yep, each move is a new adventure and there is an adjustment period to get through but we have to do what we have to do to keep them safe and well cared for. You know your Mom and what will fly with her. The one good thing, if excuse one doesn't work you can always revert to excuse two!! We went from the spa hotel vacation to medical needs for Dad over and over with a few other random excuses thrown in. There are times short term memory impairment can be beneficial

I have a library of books! I actually order a few more just yesterday on the recommendation of a new resident family member. I have gleaned some good information out of them but when I want a quick answer from experience I come here. Those of us that have walked this path know things that are not in any book! There is a good book, "Moving a Relative with Memory Loss" by Laurie White and Beth Spencer. It's a paper back pamphlet style book that I have not seen in a book store but can be ordered online. It lays out rather logically all the questions and answers leaving much up to knowing your loved one.

One thing I will recommend is to keep the number of visits down and keep them short. Give Mom an opportunity to get into the flow of her new community without always looking to your visit. I did put a calendar in Mom's room and marked the days I would be there. I ask the staff to mark off days as they passed. Mom didn't know to look at it but it was a visual the staff could use. Deb was here this day, today is this day, and she will be back this day. At least she didn't sit in the room waiting in case I showed up Also make sure the staff is on board with whatever "excuse" you use. They can make a huge difference!

And expect the unexpected! Mom actually called 911 and reported that "the girls" had stolen their van. That she was being held captive and had no way to escape. The nice policeman got a clue when they had to enter the key pad door to talk to Mom and it was rather easy to explain the problem when I got the call. They were very satisfied with the fact that the sister with the POA had physical custody of the van and neither parents had a valid drivers license due to dementia. I actually laughed my way through that entire situation. They don't lose their intelligence.... just the ability to use it wisely!

I will be thinking about you and please let me know how it all goes. Hang around and keep posting. The aftermath will be... interesting

Love, deb

 
Old 07-28-2011, 11:20 AM   #9
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Re: Moving Mom and Dad from Independent to Locked specialty care

Hi, Everyone!

Nina and Deb... as usual, y'all are so very helpful! I spoke with my brother about it this morning and he's not in favor of the fiblet so much, but rather some edited version of the truth. And this is a case of "know thyself" and I know that I'm prone to provide too much information (or "T.M.I." as my daughter says), whereas Joseph has figured out how not to do that. So I am quite happy to leave it to him to break the news to them!

And Nina, you are right that we can truthfully tell her that Dad needs it, and if Dad wants to know, we can truthfully tell him that Mom needs it. That's what we did when Dad was distraught because Mom was suffering so much. Frankly, he's being much kinder to her than she is to him! But I will not judge a couple who have been successfully married for 56 years!

She was involved in what to bring to Indep. Living, so you make a good point that we can find out from her what she'd want to take. And Dad does have a few things that we know he'll want... mostly sentimental.

And Deb, as usual you seem to know exactly what my concerns are! I appreciate the advice about how often to visit... I was wondering about that. And honestly I figure for a while I won't mind cutting back on the frequency and the time there because I anticipate she'll be giving me some pretty strong tongue lashings, if the last move is any indication!

That is so funny about the van! When my mom was so upset after the first move she accused me of stealing all of their money and wondered if I was driving some fancy car now. I told her "nope... just my 12 year old minivan like before!" So then she said she figured that I must be going on a big cruise or something. And that she was disappointed in me... and despite the fact that I'm 49 years old, that one hurt!

I will keep y'all posted (pun intended!). I appreciate any prayers for sunday when my brother tells them, and Tuesday for the actual move. I know it's everyone on here's feeling if they've had to take this step that you know you're doing the right thing, but you just hate it for your loved ones. And the thought of them being scared tears me up! And I am so grateful to have you all to discuss this with!

Love,
Sarah

 
Old 07-28-2011, 12:07 PM   #10
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Re: Moving Mom and Dad from Independent to Locked specialty care

Just remember that less is better in every aspect for a while.

Sarah, I can related to your comment... "Frankly, he's being much kinder to her than she is to him! But I will not judge a couple who have been successfully married for 56 years!" That would have been my parents. I truly believe that Dad remained the loving protector but Mom had years of resentment. I know she had unfulfilled ambitions. I think this is more true of the females of that age than the males and perhaps the reason you and I see what we do.

Ditto to the Mom deciding what she wanted and Dad having a few sentimental items that you knew to take for him. Mom took all her things. Dad had a box with his bible, a picture of his parents and old home place, a picture of his wife and his girls, and his "Bomber" book that he swore had his picture in it from his bombardier days.... and his green leather chair. Mom filled up a panel truck!

Tongue lashings were frequent and harsh. Eventually you have to find a way to just let them roll off you back like water off a duck's back. There were days I didn't answer the phone and just let her rant into the answering machine. The facility had my cell number but Mom didn't. They would call if necessary. I have been disowned and thrown out of the will so many times I lost count! She even convinced Dad to write us all a letter. It is rather amusing because he started by saying how nice it was there and how much he liked it. Hoping I was ok and how much he missed seeing me. Then said... that Mom said she wanted to go home! Not what Mom wanted I am sure but at least I knew he was content. I was also accused of stealing her money. Funny since I was the one she gave the financial POA too. The biggest upset with her for a while was that I was out partying. Party all night down that long dirt road with her car. I finally realized that it was because I was not "home" with her at bedtime. Just know it is a stage in the disease and will eventually pass.

Just a comment about the cognition ups and downs. Just when you think you are out of the woods they have a really good cognition day. Dad has been gone for 16 months. Mom has seldom mentioned his absence (we didn't tell her and shielded her). In the last week she is having an incredibly good cognitive period. She has mentioned Dad's absence several times. Once, on her best day in years, she actually ask... "What did he die of?" It took me so much by surprise that I was speechless. Good thing I guess because the moment passed and she went about collecting dead leaves from the outside bushes. She was upset this afternoon because Dad was at home alone with the girls. Yeah, that would be a reason to be upset because Dad didn't do babysitting! Then she went on and on about a survey which I know is a reference to a fight she and her sister had over splitting the farm. After a week of such upset and references I am ready to go back to the lower cognition level for her well being. Better is not always good!!!!

Know you will be in my thoughts and prayers until this is done and Mom has settled into her new normal. I do understand where you are headed. Any help I can give you... I am here

Love, deb

 
Old 07-28-2011, 05:26 PM   #11
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Re: Moving Mom and Dad from Independent to Locked specialty care

Well, at first, we think it is wrong to lie. It is wrong to talk behind their back. It is wrong to cover it up. However, if you look at it from the angle of caregiving, it is Ok. It is not like you lie to a normal person. It is just a minor trick. Say, if a truth drives the elder crazy, then a white lie is better to keep the person calm.

Also, the white lie or tricks have to be in the domain of the person's life. Don't go too far off. My FIL is the one that wants to force his son to work with him. So we just went along the flow - the only lie is it was the residential home, not my husband's home or working place.
It is my FIL's wish to work but he can no longer work and my husband is not in the same field whatsoever.

Again, if your Mom is in earlier stage, a lie won't work as she will notice. So just say something like her husband has to go there and can she try to see how it goes?

I hope it works. Don't ever try to go to the psychiatric ward although for some people it may work. For some people, they may die in the psychiatric ward and get worse.

Anyhow, just do whatever works.

The worse thing is your Dad can move first and your Mom will go later.


Sometimes you have to do the tricks. Not saying anything is one way of doing it and the best. But sometimes you have to say something...

Well, one day back home, my FIL insisted he had to teach. Well you cannot tell him or reason with him about no more teaching. So I said we will get the materials and help him to teach tomorrow. So he somehow calmed down and he forgot about it the next day.

It is a matter of strategy and caregiving; it has nothing to do with morality.
You will see.

Hugs,
Nina

Last edited by ninamarc; 07-28-2011 at 05:37 PM.

 
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