DD & MIL's Issues

[Works4me]

Pat - just because this RV was not the one for you does not mean that there won't be a better deal for you soon. Just hang in ther and hang on for now - you can do this. Call your doctor and get something for stress/anxiety - just because you can do this does not mean it will be easy or simple. Hang in there and know that somehow or another thus will get done. You have this covered!

I hate to flash credentials here but as a medical social worker since 1987, you are one of the most put together and knowledgeable caregivers I have ever run into. You can do this!

 & 

[Ombud]

That's wonderful that she loves mail! Figure out how / what to send her every day .... a postcard, letter, small package. Sometimes signed by you or your DH, sometimes not. You'll both feel better

[busymom]

You handled that very well. I remember a woman telling me when DS was little that I was the perfect person to raise a boy like him.  I held my tongue, but did tell her something to the effect that I knew NOTHING about autism when DS was diagnosed, that it was very much on-the-job training. 

[tama]

I know how you feel on the people like that never minding their own business.

It reminds me greatly of people who would tell me when I was in the worst of my depression that I need to keep fighting, that you are blessed with a life and you can't just waste it...God has this and that ready for you...

And I wanted to say to them, so do YOU want to do anything to help me feel any better? No?   Then why are you preaching at me?

[zibazinski]

Pat, home isn't perfect for her either and unless that new home forces you to come get her-do not do it. She needs this more than you do. She needs to be somewhere in a "forever" home. Realistically , yours cannot be.

[taz157]

Sept 5, 2015 3:54:29 GMT -5 zibazinski said:

Pat, home isn't perfect for her either and unless that new home forces you to come get her-do not do it. She needs this more than you do. She needs to be somewhere in a "forever" home. Realistically , yours cannot be.

Yeah that. ((((Hugs Pat))))

[kjto1]

Pat, do you have a phone number of a case worker or a social worker?  Ask them, after hubby and I die, what will happen to DD in the "this" situation? (The home closes, she gets sick, etc) Then do that once she is placed. (referencing to that you hope you won't have to get her and bring her home before your trip.)

You are still her guardian, but you have to let go and not hover all the time (helicopter parent).  You still love DD, you are wanting her to be safe and healthy (as in living in a safe, clean environment).  You have to stop hovering over every choice the group home makes that is different than how you would do it.  You have to start letting go, so you can have room in your life for living for YOU.  This is what YOU NEED so you don't end up in an early grave.

I know you have spent everyday of the last 45 years, concerned about every decision you make regarding your daughter.  You are a loving, caring Mother.  It will be hard to break that habit - but you have to for both of your well being.

[Pants]

pat - we get it. I swear, we do. But once she goes there will be rough patches, for you and for her.

Once she is placed they cannot just kick her out. If she needs to be placed somewhere more restrictive, then cross that bridge when you come to it. But these people are pros, so have some faith in them and in her.

I know it's hard not to play "what if", but worrying about those things is only going to cause more stress. Focus on getting her placed NOW, worry about after AFTER.

[ՏՇԾԵԵʅՏɧ_LԹՏՏʅҼ]

Sept 5, 2015 3:54:29 GMT -5 zibazinski said:

Pat, home isn't perfect for her either and unless that new home forces you to come get her-do not do it. She needs this more than you do. She needs to be somewhere in a "forever" home. Realistically , yours cannot be.

Exactly! Of course she's going to be upset & raise a stink - but if you buckle under and rush over to take her out for a day, or a weekend, you're going to be sending mixed signals that if she acts up you'll come "rescue" her everay time.

The only way she'll adapt more quickly to her new home & surroundings is to leave her alone there for at LEAST a couple of weeks before visiting - she's going to have to learn to adapt - so the sooner the better.

(I also have a strong feeling that once she's finally fully settled into the group home, your DH will suddenly decide it's time to retire for good).

[mmhmm]

Because DD is higher functioning than most of the others in the home, she'll find she's able to help them. She'll be valuable to them and be seen to have skills they don't have. There, she won't be the one who doesn't "measure up". She'll be the one who can do what they can't. I can see that really helping her to think differently about herself once she gets over her initial reaction to having to move and make her own life elsewhere, @patstab. I can tell you for sure, you don't want someone other than you to decide where she will spend the rest of her life. Without you to advocate for her and find a good place, she'd just be put wherever there is an open bed.

[mmhmm]

Sept 5, 2015 12:43:11 GMT -5 @patstab said:

She barely reads at all, knows her alphabet and numbers but cannot remember how to add much of anything and subtraction

is beyond her. So though she can do a lot, she still can't if you know what I mean. Going to take her to grandmas for a bit.

She said she would bring her home if she had a fit, if she could find her keys, I told her where they were.

What a mess. It's only 3 miles on country roads thank God

She won't need arithmetic to help those who are physically unable to do some things. She won't need it to help those who are feeling down. She won't need it to help pick up things that are dropped, or assist someone to get where they want to go, or help in the kitchen (if that's allowed). She's got skills others may not have. This environment can allow her to shine.

[mmhmm]

Thing is, DD isn't a child but can't really be an adult. You treat her as a child because, in most cases, you must. She wants to be treated as an adult while acting like a child because, in most cases, she can't do anything else. It's just a miserable situation all the way around at this juncture. I imagine the erratic behavior will probably continue until the deed is done and she's moved. Then, she's going to have to adjust - as difficult as that's going to be for you both. Fortunately, it's only a few days away. I've always told myself I can do a few days hanging by my thumbs. I'm afraid that's where you find yourself at the moment. Just hang in there, keep as much peace as you can, and move quickly and efficiently when the time comes. My thoughts are with you. I can only imagine how this must feel for you. 

[zibazinski]

You need someone to help you make that drive. Even getting her in the car might be dicey. Keeping her in might be, too. Will she run off when she figures out where you are or going? You should have back up. Not be alone. Hire someone to go along and help you. There's people that can be hired. It's safer for all concerned.

[zibazinski]

The pros and cons of modern medicine.

[dannylion]

Pat, I'm sure the living facility probably mentioned this, but just in case they didn't, make sure her name is on everything. I recommend using a permanent marker rather than iron-on labels, but just make sure everything (EVERYTHING) has her name on it.

When my mom was in the nursing home for 3 years, we learned the value of having absolutely everything labeled. Some of the residents were more mobile than others, and a few of them in the main facility were in the early stages of dementia or had other cognitive issues and would occasionally wander into rooms and "liberate" items. There wasn't really a theft problem; it was just some of the residents with mild cognitive issues who were not yet in need of the secure Alzheimer's wing.  The staff was very familiar with the residents' possessions and would generally find and return things when that happened, but having everything labeled was a big help.

The facility will probably require labeling on clothing if they provide laundry service.  They might offer a labeling service, too, but it's probably iron-on labels, and I found that using permanent markers worked better.

Sending good thoughts that this goes more smoothly than anticipated and that your DD settles in and finds some degree of happiness in the arrangement.  

[Blonde Granny]

I would check with the local courts and see if they close down during the holidays. No sense planning on something only to find out that every is closed until after the first of the year.

[busymom]

I just wanted to comment on labeling & theft.  YES, you need to label EVERYTHING. I even wrote Mom's name on her telephone. Plenty of things kept "disappearing", & assuming a missing item is still on the premises, it's easier to prove it belongs to your DD if her name is on it. Sadly, it isn't just residents with dementia who take things. Staff members have taken items, or cash too. If your DD has jewelry, don't let her take it to her new home. That's the first to disappear.  And, keep the dollar amount small that you give her.  My Mom even had very small amounts of money stolen.  I can't imagine stealing $1-$2 from a senior, but it was happening all of the time, to the point where Mom & I got very creative where we hid her money. 

[Blonde Granny]

Her laptop is likely to get legs also.  Be very careful what she has with her.

[busymom]

Do they still sell those "laptop locks" which allows you to lock it to a desk? That might come in handy.

[Tennesseer]

Sept 6, 2015 20:44:12 GMT -5 busymom said:

I just wanted to comment on labeling & theft.  YES, you need to label EVERYTHING. I even wrote Mom's name on her telephone. Plenty of things kept "disappearing", & assuming a missing item is still on the premises, it's easier to prove it belongs to your DD if her name is on it. Sadly, it isn't just residents with dementia who take things. Staff members have taken items, or cash too. If your DD has jewelry, don't let her take it to her new home. That's the first to disappear.  And, keep the dollar amount small that you give her.  My Mom even had very small amounts of money stolen.  I can't imagine stealing $1-$2 from a senior, but it was happening all of the time, to the point where Mom & I got very creative where we hid her money. 

My mom, with Alzheimer's and in a nursing home, would occassionally remember she was married and miss her wedding ring which we had taken away for safe keeping. I bought her a ring with CZs as a replacement to wear for her wedding ring. If stolen, no major loss. But she was happy and did not know the difference.

[Tennesseer]

Sept 7, 2015 0:13:58 GMT -5 @patstab said:

They keep an account of money that the parents give them, its deposited or kept in a safe

and doled out to them as they want it to spend so I think its accounted for.


She doesn't have any expensive jewelry but some of it looks expensive.


I do worry about her laptop, but they don't even have internet  so no others, we have

to pay for that.


They said they would label everything with initials, I may go ahead and do it.  They want

me to present and inventory of everything we bring.


Sue Anne got a little art kit today and was successful in making me a little paperbag

critter with eyes, eyelashes, feet, and hands, its so cute and its one of the few kits she

has actually been successful making anything from.  I'm so happy for her and I will

put it up so she can see it displayed.  She tries so hard and just can't do most of this

stuff.

Frame it if you can. It can go on her wall at the home.

[marvholly]

<p>Pat </p><p>Just want to say hope everything goes well bor you & DD this week.  Take some'me' time ASAP.  You deserve it.</p>

[Wisconsin Beth]

It will be ok Pat.  Just remember to breathe.  Be kind to yourself. 

[Green Eyed Lady]

The "worst" might just happen, Pat. And again....it may not. Your daughter just may thrive in an environment where people are trained to stimulate her. Remember, those people work shifts. They get to come in, take care of your daughter and then go home and get a break to recharge before they come in again. You don't get that. They get to come in refreshed and ready for a new day where you are so exhausted you can hardly think. She may just enjoy the heck out of the new things to do and the new places to see. As someone else said, she may get to feeling like she's contributing if she is able to help others there. This may open a whole new world for her.

 Now I wouldn't expect that the first few weeks, because from what you've posted, it appears she's figured out she won't be able to manipulate staff with her tantrums like she does you. I know that probably nobody in the world is better trained to take care of your daughter than you, but that's not going to last. You simply can't do it. 

Be prepared for the worst, but hope for the best. You may just be surprised.  I'm sooooo rooting for you!

[NomoreDramaQ1015]

I know you probably won't take this advice but Pat I strongly suggest you find someone to talk to.   You're going to worry yourself to death.  Having someone to help YOU thru the transition would be of immense help.  Your DH isn't around and doesn't get what you've been thru based on your posts.   Find someone who will just listen and not judge/try to help.


They said they have a guy at the day center that cried every day for a month and one that will go outside and stand and cry. That is awful, until they give up hope I guess

OR they adjusted to their new normal over time with the help of the staff and went on to lead as normal a life as they can.

I understand you're nervous and it's hard for you to give up control after all this time but I think you are manufacturing a lot of your boogeymen when it comes to this move.  

That's not going to do you or DD any good.  If you are going to both succeed in this transition you need to stop reading into everything.  

[NastyWoman]

[mmhmm]

My thoughts are with you and DD, Pat. It's sad that it's come to this but it was inevitable. Now, DD must begin the process of being on her own and living her own life as best she's able. She still has your love, hon, and she still loves you. She just doesn't have your constant presence and you don't have hers. You'll both go through a period of adjustment.

[The Captain]

Sept 8, 2015 7:38:57 GMT -5 @patstab said:

I'm so nervous, poor baby is going to be so upset. They said they have a guy at the day center that cried every day for a month

and one that will go outside and stand and cry. That is awful, until they give up hope I guess. That's how those people look like

to me that they have given up hope. It just makes me sick. But what good would it do to live like this and me go to an early

grave and her still have to go?

She is ok this morning so far, I saw her asleep on the couch at 5 this morning, kitty woke me up wanting food so I stumbled

in there.

This is going to haunt me the rest of my life, I will never have peace whether she is here or elsewhere.  Honest to God I think

if someone knows beforehand to save themselves and their child a lifetime of sadness and misery they are better off not born.

I know many will disagree, but live through this and tell me its worth it for this "child".  This is the hardest thing I've ever done

in my life.  I had to make the decision to let my mom go, but she had lived a lifetime at least.  And the last 10 years or so had

been a wonderful time in her life so that is different.

I am a sad person today, but no I'm not changing my mind, I can't.

Pat,

I'm going to try and give you a different perspective on this, because I saw it all the time with my DD.

Every year at her daycare there would be one or two kids that were being left there for the first time.  Many had stay at home parents for years and daycare was a big adjustment for them.

They would cry and be sad because their life was changing and often they didn't understand it.  Their sadness never lasted long though, because they would realize they had more people to interact with and eventually came to the realization that they could do a lot of things for themselves and that their parent didn't have to jump at every demand.

Obviously I know it's a bit different in your case, but I've also seen seniors much happier in retirement homes then they thought possible.  Give it a year.  You'll be shocked at how far your DD may come.

[TheOtherMe]

Pat,



Any parent who has a child with the kind of illness your daughter has is going to have to make this decision at some point--or have it made for them.  I can only guess that the transition will be easier with you still being able to see her than if it was because you had passed away.

This doesn't make it easy, I know. 

[Waffle]

Maybe you should sleep in the spare bedroom tonight.(you said earlier that room had a lock on it.)