DD & MIL's Issues

[swamp]

Aug 19, 2015 6:38:05 GMT -5 @patstab said:

Let's just let it go. I'm sure they can justify it by saying it was just general and not directed at me specifically. Right now I have more important things to worry about.

This is making me sick, with DD its damned if I do and damned if I don't.
I know she isn't going to get the care and good food she gets now. And
I saw some of the women with their teeth rotted out. These may be from
institutions, I don't know. It's just going to worry me to death. And
they were giving them Kool Ade with dinner. I don't think she will get
the foods she needs or anything. It's one of those things that if she
stays home I am getting to where I am worn out with the care and yet when
she is gone I will be sick with worry about her.

It's just not good for me either way and going to take me down emotionally.

And people wonder why I believe in abortion. When you have lived your life
worrying about this happening and knowing it will someday its just living
through hell.

There is no guarantees that even in expensive private pay places they will
get the care they need. There is nothing fair for any concerned.

Also DD just doesn't fit in these places she is so far above their functioning

its sad.  But I was up at 5:30 when she started having a meltdown giving

her orange juice and cooking her pancakes but that stopped it.  It is somehow

food related. And that wears you out too.

I would not wish this on my worst enemy. But one day it will end anyway
as I can't live forever. I told her yesterday I wish I could but just can't

I just got back from a day in family court.  

Lots of people with rotted teeth there too, and they are fully functioning adults.

I'm going to say this with the best possible intentions:  You are a control freak.   Somethings you just have to let go.  Kool Aid for dinner, in the grand scheme of things, is nothing.   She's having dinner.  It's not what you eat, but lots of people function just fine on other diets.    Go visit and bring fresh/canned veggies with you.  The other residents will probably appreciate it.

[Green Eyed Lady]

I agree with Swamp that you are a "control freak". But? You have HAD to be. With everything on your plate with your daughter and your mother-in-law and husband being gone a lot of the time, you HAD to have iron control to deal with it all. That's what you need a break from. There is not going to be anyplace that is just like home. Your home and your ways are unique to you.  You aren't going to find a place that is run exactly the way you run your home. Obviously, you have to pay attention to health issues like her teeth, but you can allow yourself to let go of some other of the small things. Not many places would clean to my standards either, but that doesn't mean that conditions are unsanitary - just not like I do it. Give yourself a break, Pat, or you aren't going to be able to enjoy any down time at all. The purpose of this move is to give you a break from the everyday stresses and grinds. Don't replace those with worry. I know it's easier said than done and a person can't fully understand if they haven't lived it, but you have to try for your own sake.  Don't invent problems. If they occur, deal with them, but don't worry yourself sick inventing them.

[skubikky]

Hang in there kiddo.

This part is difficult as you're actually seeing what the homes are like.
No one will be perfect but you'll find the right one.
There seems to be some good choices.
Once you get that decided and have her medications set up then you'll make it work.

It won't be easy but I'm certain it will work out.

No one knows exactly what it is like to walk in your shoes but you're doing
a great job.  That in addition to keeping the house up and all the other things you
have to take care of.

You're an amazing dame! 
You have a lot of support here. 

[Value Buy]

Aug 19, 2015 12:44:44 GMT -5 Green Eyed Lady said:

I agree with Swamp that you are a "control freak". But? You have HAD to be. With everything on your plate with your daughter and your mother-in-law and husband being gone a lot of the time, you HAD to have iron control to deal with it all. That's what you need a break from. There is not going to be anyplace that is just like home. Your home and your ways are unique to you.  You aren't going to find a place that is run exactly the way you run your home. Obviously, you have to pay attention to health issues like her teeth, but you can allow yourself to let go of some other of the small things. Not many places would clean to my standards either, but that doesn't mean that conditions are unsanitary - just not like I do it. Give yourself a break, Pat, or you aren't going to be able to enjoy any down time at all. The purpose of this move is to give you a break from the everyday stresses and grinds. Don't replace those with worry. I know it's easier said than done and a person can't fully understand if they haven't lived it, but you have to try for your own sake.  Don't invent problems. If they occur, deal with them, but don't worry yourself sick inventing them.

We are no longer talking about a "break for Pat".
We are talking a quality of lifestyle for both her daughter as well as for Pat.
No house for disabled is going to be like the home DD has had.
Fact of life.
No easy answer, but Pat and husband have to realize, they will not be their for DD forever, and make the best decisions now for life in the future.
What she is trying to accomplish for DD now is the right course.

[lund]

Written in bits and pieces, so not quite coherent:

This sounds like good progress indeed.

My thoughts:
You have done a huge job taking good care of your daughter all these years, and now when unfortunately her (chiefly mental) health is deteriorating, you are working on finding a good solution to the new situation. There will be an adjustment period for all of you, probably of about a year. It will not be easy for anybody, but the situation will probably get better for you very fast (no screaming, able to sleep better at night). You will still worry though. (Edit: Because you love your daughter, worry will not go away. It will probably diminish as your daughter adapts to a new routine. End edit.) Your daughter will have periods when everything is bad and either rage, cry or whine. There will most probably be better periods too. Learning to live more on her own is not easy, but if it works out, it may be very good indeed for her.

Do not promise anything about visits. Visit when convenient for you, hopefully often, to check that the care is OK and that your daughter is as can be expected, but do not let yourself be emotionally blackmailed. If your daughter's mental health is improving and if she can stand the changes, visiting back home for holidays or some odd days when it suits you may be a nice surprise for her. If not, an outing may be quite enough what (both of) you can handle, or else, a visit at her place will suffice. And surprise visits can sometimes be good. (She gets less time to think herself into a misbehaving mood or plan anything not desirable; you get to check on staff and activities without them having the time to cover up any sloppiness.)
Sending postcards can be a way to keep in touch, especially if you are away from home (for instance visiting son). They have the advantage of being able to be re-read and shown to staff and friends, and hung on the wall.

It is very good that you work on getting your daughter well taken care of while you have the energy to do so. It is extremely tragic if mentally handicapped grown-ups have to move into care homes due to the last parent dying, making the transition hard and sudden. Now you can pick a place and are able to check that the chosen one works out, not to forget ease the transition to living there.

You will be able to get rested and get back to being your old energetic self again, but it will take time, a time that I, without any knowledge or references, would guess would be about one to two years due to the very long time that you have been under press. Please be kind to yourself and give yourself this time - you need and deserve some rest.

Enjoy your trip to visit your son and his family! (You do have a valid passport not close to the expiry date?)
I think that it is good that you travel to visit him. I would not be surprised if it would do him good to hear and experience that he is as loved as his sister, even if her needs has had to be prioritized previously and he intellectually realises this.

Do not listen to any criticism about your finances. It sounds like jealousy to me. Just thinking about what state care would have cost for your daughter during all the years that you have taken care of her, I get angry. Do absolutely get legal and financial help to set up a trust for her if/as recommended by them.
Over here, and I assume that it is the same in the US, most people do not understand that the "pocket money left" after paying for all other costs needs to cover anything from clothes and shoes to hygiene articles (necessities like moisturizer, comforts like facial soap or hair removal stuff) to podiatrist to hair cuts to postage/stationary/phone/internet costs to money for fun and outings - if there is any left for such things.
I wonder if these people could keep themselves clad, shod, clean, with an appropriate level of hygiene, skin care, foot care, and hair care, and pay for some communications with the outer world, etc for $600/year even if they tried to spend as little as possible?


It is good that you are planning what your daughter will bring. Packing the needed things from the beginning means both not having to go there if there is a risk of melt-downs as well as your daughter feeling better about the situation.

If the care home is similar to the ones in this country, it might be good to label her clothes (including underwear) and shoes, and probably also other stuff. It is a long time ago, but I remember that staff liked the woven sewn-on name tags plus a permanent textile marker - the woven were easy to read, and the marker prevented some theft (low risk but seemed to happen once in a while; people could probably not use or sell the clothing or things with names permanently written as easily).

If she has anything like costume jewellery (nothing expensive) that she will bring, a lockable box might be a good idea. Find out if she would be allowed to have the key on a bracelet or similar. (You of course will have a spare key. And a photo of each of the contents.) And it probably is possible to bring stuff (like a favorite doll or some CDs) that may be "special" a bit later when she has adapted some and it is clear that things do not disappear (which would be even worse if it is the most beloved stuff that goes missing). (It may be easy to misplace stuff when in a new place, and when someone is new, the other persons living there may be very curious about the new one with the new interesting stuff. They may not realise that they can not borrow it, at least not at that time, without creating havoc.)

A list of her likes and dislikes can be good for staff to have (here, they were often found both in the patient file and on the frig door unless the patient had chosen to be secretive). Start with anything she must not, under any circumstances, eat - like those "harmless" OTC medications, and write that she gets meltdowns and rage attacks from them. (Usually, some staff may not be the brightest bulbs in the chandelier, and the clear explanation of the results as something that they will not want to deal with may help prevent any slip-ups.) Then list any milder discomforts ("can only drink half a cup of milk - else diarrhoea") and dislikes ("does not like lima beans"), and then start on the likes ("loves ice cream, especially strawberry").

Another good thing to do a little later can be a photo album with the pictures of family, friends and pets. First names ("Aunt Jo", "Grandma") will be fine. This also gives staff and other residents something to talk with her about.

If the staff is allowed to accept tips, consider tipping them. Else, consider bringing in food/snacks/sweets (if and as allowed) to share among residents and staff.

Another thing that was liked was when the family of the owner of the VHS player (yes, quite some time ago) brought a new movie, usually of the more "family friendly" kind, be it James Bond or Disney, and showed it in the day room with a bowl of popcorn. Many residents were broke and/or bored, so this was valued. And staff liked it - the hardworking went and did some work, and the lazy ones got to sit down.

Hang in there - you are doing a great job!

[NomoreDramaQ1015]

Oh gee you guys think I am a control freak, you are absolutely right

It's understandable. I would be too in your case.

BUT you'll give yourself a stroke if you keep worrying over every little thing like whether they clean to your standards or let her have kool-aid with dinner.

Writing up lists sounds good.  That can help you focus on what you feel are the most important things you feel they need to know.  I am sure they will appreciate it.

Hopefully in turn that will help you start to let go of some of the little things.   This is an opportunity for you to have a life now, don't put yourself in the grave stressing over things you don't have control over and don't really need to.

[CCL]

I keep a kind of mental file of things I have to do and tick them off and feel bad if I don't get them done.

I tend to do this too. Instead of keeping a list in my head I started keeping it on a notepad in my phone. I think I was mostly afraid I would forget something, so a list with items that can be easily deleted has helped me.

[zibazinski]

When you have 24/7 care for someone, it's very hard to ever relax. You feel like you've always forgotten "something." It's exhausting to think that way. Trust me. Try as hard as possible to let go. It'll be a process. I'm still struggling with it.

[zibazinski]

Trying to not make the thread about me but trust me, Pat isn't going to breathe easy for a very long time. When you're so involved, un involving isn't that easy. I'm going to Florida for the weekend to see the kids and either buy or seasonal rent a place. Even though DH can be left on his own a little, he can't drive yet and someone needs to make sure his BP and meds are taken and on time. Plus, dosages can be switched depending on blood work results. I've hired an LPN to stay while I'm gone. She's more qualified than I am. Think I'm not stressed? Yup. Trying to have a plan for every scenario. DH tells me to not stress and have fun. I'll try but my mind will be on what's happening while he's out of my sight/control. I was more relaxed with a two year old. But then again, my kids didn't have health issues. I can empathize and sympathize and it's only been a year for me transplant anniversary this Friday and only a few months before that that we realized there was a problem. 40 years of it? She's a stronger better person than I. 

[Wisconsin Beth]

Aug 20, 2015 11:07:22 GMT -5 @sroo4 said:

Am I the only one thinking Zib and Pat need to go on a vacation together? 

You'd need to include single moms on that vacation as well.  And moms with kids under  the age of 5 or so (5 is an arbitrary number based on my own life)

[busymom]

Road trip!!

(You're right, though.  I'd be worrying about my DS during the time I'd be gone.)

I agree that it will be a process for Pat not to worry about her DD 24/7.

[GRG a/k/a goldenrulegirl]

I think ALL parents worry about leaving their kids anywhere, Pat.  I just dropped off a 19 year old freshman at a college 8 hours away (on a good traffic day).  He has a life-threatening food allergy but will have to manage eating in the dining hall.  The dining hall serves stir-fry with soy sauce regularly.  There is tofu on the salad bar.  The white bread they made the grilled cheese sandwiches on at lunch yesterday had soy flour in it.  I do not allow soy into my home.  We do not eat at Asian restaurants.  The dining hall might not have separate cooking utensils, grills, pots and pans so cross-contamination is possible.  This is just not how *I* cook for my son.   

But, that's okay.  It really is.  

We owe it to our children to let them live their own lives to the fullest possible extent.  We need to give them wings.  Some of our children fly earlier and farther than others, but, most, if not all, can fly to somewhere new.

Let your daughter fly.  It won't be home.  No place ever can be.  It WILL be different.  But, different doesn't necessarily mean worse.  Different can be, and often is, better.  

Try to change your thinking.  Consider that a whole, new, world might open up for your DD.  Her social life will expand exponentially between the group home and the day center.  She may very likely find some real, genuine friends.  She needs friends.  She needs the challenge and stimulation and variety this move will give her.  You are NOT giving up on her and you really need to stop thinking that way.  You are giving her her wings.  You might need to push out of the nest just like mother birds, but she WILL learn to fly as best she can.  

Let her spread her wings.  It will be okay.  

[myrrh]

Pat that is awful. I just cannot believe the brazenness. Stealing from people with dementia and alzheimers has to be the lowest of the low.

[zibazinski]

It's hard but she's right. She'll be okay. But now what about you? Your whole life has been about her. What's next for you?

[Deleted]

Patstab, I just want to say how much I admire your strength and energy. You are an incredible woman. I have tears in my heart and my eyes for you. I know how much you needed this to happen, and how much better you will feel when she integrates with this group. I just want to wish you every success with your daughter's new home. I also wish further strength and fortitude for your own heart. 

[mmhmm]

Aug 20, 2015 20:24:12 GMT -5 zibazinski said:

It's hard but she's right. She'll be okay. But now what about you? Your whole life has been about her. What's next for you?

Even that will take awhile, zib. Mother passed away in December, yet I still catch myself on hyper-alert every now and then. It does pass, I know, but it takes time.

[zibazinski]

Aug 19, 2015 21:18:17 GMT -5 @patstab said:

Went to MIL's to give her money, she didn't remember she called. It was hotter then hell in there 85 and she had the ceiling fan on, she said oh I don't think its bad. She had the furnace on!! I turned on the air but I think its going out, will be cool tonight and will call the repair guy. I figure she was trying to cool it off and couldn't figure out how. There is our next mess. We are going to end up having to go to a compentency hearing and get her in a place. 


The son said his mom refused to go back with them and they just decided to let her go and when she calls the cops again tell them to take her in for 72 hour observation. They have tried everything else and can't get any anything done.


They are having problems with his MIL, she got scammed. Some guy came to her house and they were out of town and told her she needed repairs, she is 89. I guess he said he needed to go to the bathroom and when in the house she kept telling him she didn't have any money. He said we already put the lighting rods on the house and you owe us $2000. He actually loaded her in his truck, took her to the bank and she got the money out. They like me were livid, I said the teller didn't know something was wrong. I guess she told them she couldn't do anything it was her money. Well they got him on surveillance tapes and found him and arrested him. But they haven't gotten his partner yet. Stuff like that is so sad for these old people. How could someone do that?

She won't get her money back though.




Lots of us have problems.

I'm seriously amazed that happened. Bank people are trained to watch for the elderly taking out large amounts of cash. They get involved. I've watched it happen. Defrauding the elderly is not a new thing.

[taz157]

  I hope everything works out and your DD eventually sees that this is for the best for everyone involved.  I hope she thrives!  

Happy birthday Mr. Pat! 

[zibazinski]

Turn your phone off. Lock your door. Get some rest.

[busymom]

Pat, I'm glad you got through a very difficult day. Seriously, if you have to pick her up & bring her back, I would strongly suggest having her sit in the back seat, in the opposite corner of you when you are driving. I'm thankful you didn't get in an accident, or worse. I'm wondering if they are able to provide transportation in the future, like one of those vans they've got in the city here?

[zibazinski]

Hopefully she stays there. Coming back would be bad for Pat and for her.

[plugginaway22]

At the very least, install a locking doorknob on your bedroom!  Good luck, this must be very difficult but your description says it is definitely time.
Cannot imagine how you did it this long, no one deserves the peace more than you.

[Tennesseer]

Aug 22, 2015 11:33:41 GMT -5 @patstab said:

There is no way for me to install a doorknob, these are French doors, solid, the previous homeowner put up. They did not drill holes for

a knob or put up locks like you can lock from the top or anything. I do not like this design.  The only way I could stop someone coming in is push

furniture in front of them. I asked DH to put in doorknobs but he is always so busy it never got to the top of our priority list.

I could move the cat litter box out of the spare bedroom and sleep there, but its across from her room and I will hear her all night

and don't want to do that.  And if I move furniture in front of them the cat can't get to her food and box.  I guess I could bring all that into

my bathroom for awhile.

My husband must be on the new project or their phone system is down again.  I tried calling him on Skype and no answer.  Not sure what is

going on there.  I'm worried about son and family too in Korea, they lived something like 12 miles from the DMZ, not sure if its further south since they

moved, need to call them tonight.  I hope he isn't in the field with the soldiers, many times on these exercises he is and traveling from place

to place to oversee, troubleshoot, etc systems.  That damn dictator in N Korea is crazy, he keeps killing off his senior military staff, he will end up

with guys nutty as him. 

Pat - could you attach a few bells to the doors thst would at least awaken you if your daughter enters the bedroom?

[CCL]

Maybe hire someone to install a new door?

[Pants]

Pat - listen to yourself - you are afraid of being attacked in your sleep. If ever there was a time to throw money at a problem, this is it. get new doors, drill in some bolts, move furniture, do what you need to do to stay safe and sane.

[busymom]

In the meantime, you could use the old burglar trick. Put a pile of glass pop bottles in front of your closed door. If anyone tries to come into your room, it will be VERY loud, & wake you up.

[Tennesseer]

Aug 22, 2015 12:49:09 GMT -5 Pants said:

Pat - listen to yourself - you are afraid of being attacked in your sleep. If ever there was a time to throw money at a problem, this is it. get new doors, drill in some bolts, move furniture, do what you need to do to stay safe and sane.

To ever put the house on the market and sell it, those doors will probably have to have knobs/locks put on the anyway. DO it now rather than later.

[mmhmm]

You're not being horrible. You're being human, and you're exercising common sense. This is the best thing for your DD. Personally, I think you're on target with the "spoiled brat" diagnosis. She's used to manipulating you to get her way. That's not going to work in the new environment and she's not going to like that one bit. However, she will adjust, over time. The important thing is, she's safe and cared for. She can make it easy on herself, or difficult. If you stay strong in your decision, sooner or later she's going to have to realize this is it and that it's the best thing for her in the long run.

[mollyanna58]

It was pitiful her begging me to love her and keep her at home, but she doesn't seem to understand you can't treat people the way she is and live at home. As I am getting older her demands became more and more. And it wasn't asking it was demanding and screaming.

I suppose it is frustration of not being able to do what she wants. But I'm done so I will buck up and get through this and then move on.

She may not be able to understand that she can't treat you like that.  And, yes, you will get through this, and things will be better for both you and your daughter.  It's an adjustment for both of you. 

[CCL]

You could also set up a little wireless alarm outside your door or anywhere else you like. Might be helpful when you are home alone. You can pick up something simple for $10-$15. We have one that has an adjustable volume we put on the porch so we know when packages are delivered. They are very simple to set up/use. I think we paid $10 for it.

Something sort of like this:
www.walmart.com/ip/10258358?wmlspartner=wlpa&selectedSellerId=0&adid=22222222228000008945&wl0=&wl1=g&wl2=m&wl3=40880111192&wl4=&wl5=pla&wl6=70046511294&veh=sem