Just when I think everything is settled, that Daddy is getting
used to his ALF and the fact he can't go wandering at will down
the local highway, that he actually likes the private caregiver
I hired to come in just for him...
He calls begging me to get him out of there...again. It's a refrain
I've seen so many of you citing from your own loved ones. I've seen
great advice to others on how to deal with it (including backing
off and letting the professionals deal with it so that the LO can
better settle in). But when you hear it with your own ears...
it's like the difference between your own baby's cries (and I
was an extremely hands-on Mom--always picked him up right
away and held him close) and someone else's baby. Both are
heart-wrenching, but your own makes your heart bleed.
When this has happened before, we have usually been able
to talk it through--If we talk long enough, we can get to that
"real" place where Daddy knows and understands and accepts
that he has this disease and he is where he needs to be and
that he should be thankful he has enough resources to afford
such good care (for now...). But the last couple of times, he
stayed stuck on wanting to get out of there and kept telling
me he can live on his own--he just needs to use "lists" and
check things off, and he'll be fine... Makes me want to
laugh, cry, and--sorry--slap him silly! I'm ready to just
give the whole discussion thing short-thrift and go straight
to the "this is the way it is, this is why, and it if it does
change, it will NOT be for the better!" (i.e., other facilities
would not be nearly so accomodating to his antics, and
we'd likely be facing having to put him in a locked
facility).
I don't know what I'm asking. I'm venting. But I could
also use some from-the-gut reactions from any of you
who have some words on this. Straight-shooting is
totally welcome.
Thanks for wading through to this point with me!
Carol

Venting to someone that can appreciate what you're feeling is a good thing. And I appreciate this forum allowing us to do just that.

Sometimes it helps to know that you are not the only person that has had to deal with such problems. I used to tell myself that "nothing lasts forever" and I can get through this.

Blessings to you today.

Hi Carol,

I remember my MIL at the same stage. She was in a rehab center and screamed to go home. We said yes, but only with a 24/7 caregiver. She fussed, fought and fumed. We stood our ground.

She was also convinced she could go it alone and would tell anyone who would listen that she(the caregiver) was a nuisance. After just so much we(her son,me and her sister-in-law) talked and came to an agreement. We told her that we all agreed and she could not be on her own. Didn't make her happy, but her sister-in-law was the one that finally got through to her. She basically said, "No matter how much you fight, it's not going to work. You CAN NOT be on your own".

Guess it was tough love. It wasn't easy. I think you may be at the same point from your comments.

We got through that point. Be prepared though, this topic has never gone away completely.

Thanks Susan--You reminded me of a very valuable piece
of ammo I have in my arsenal when this comes up again.
My 3 siblings and I actually had lunch with Daddy about
6 weeks ago so that we could provide a united front.
That's the point we brought in the private caregiver,
which he is now fighting. I will definitely bring up the
fact that all of his kids agree he must either stay put
or go to another place where help is available, but that
the place he is in is by far the best. If he keeps pushing,
I'm toying wtih the idea of bringing him to tour a couple
of the less desirable places. Don't know if that would
do ANY good, and may just be a total waste of time,
since he's really, really good at forgetting whatever he
doesn't want to remember.
Carol

Thanks for the good thoughts, Flinty!
You're right that this too shall pass, and it sure
does help having support, whereever we can
find it!
Carol

A few weeks ago my grandfather tried to bring my grandmother to an AD daycare. After taking two step inside she said she wanted to leave, and that she didn't want to be around all these "types" of people. She still denies that she is sick, and doesn't believe she needs to be cared for. My grandfather being so emotionally and physically taxed gave into her, and took her back home. He simply doesn't have the strength to argue with her anymore, and feels too guilty leaving her there. In my opinion he needs to make these decisions for her. When a 1st grade child doesn't want to stay at school when his mother drops him off in the morning, the mother knows she has to leave him there or the child will never get used to this setting. It's sad to say this, but in many way AD individuals have regressed to a child-like state. So maybe we have to care for them in this regard during certain situations. This doesn't mean treating them in an infantile way, but rather understanding their level of cognition doesn't allow them to rationalize, and they need someone to make decisions for them. I thought about it today, and it seemed to me that a long-term care facility is inevitable. There will be a point in time where my grandfather will no longer be able to care for her, and she will have to be cared for in a facility. Daycare may get her used to being in this type of environment, and will also give my grandfather the few hours of downtime he so desperately needs. It will also provide her with the interaction she desperately seeks. At home she does absolutely nothing but walks back and forth from her house to my parents house, at least 15 times a day. I think caregivers need to be strong in making these decisions. If the decision was made to place a LO in a caregiving facility this decision should be upheld (assuming the place is up to par with expectations).

First of all let me preface this by saying that I am NOT speaking from experience.
I know this is painful for you but you know he needs to stay there. I think part of your frustration is that you are trying to reason with him. Even if you get him to see it your way today, that could all change again tomorrow.
As I see it there are two choices. Either tell him you are sorry but this is the way it's going to be and then change the subject or use those little fiblets and tell him he can go home in another month if he behaves himself. Then just keep telling him that every time.

Carol, I also am not posting because I have experience in this particular area, but I just want to say I'm sorry you are having such a difficult time right now. We are glad you are here to vent. We are good listeners! My thoughts are with you.

I still have mom here with me but lately I've been thinking about the future and I have no idea what's going to happen, so I may be in your shoes someday. I don't have a single suggestion, I am just so sorry this is happening.

My mom also thinks that if she "tries harder" and writes things down she can live by herself again. I get around that by telling her I can't afford to live by myself so I have to stay here. She won't hear of going to a day care--I think she would get a lot out of it, but she has refused it totally.

HI
Sorry you are having such a bad time! When they get so upset it's so hard to not just give in!

My Mom chose to go to a retirement community befroe diagnosis They have a cafe for breakfast, on her own for lunch and dinner in the dining room. She wanted to go there so she didnt have to cook etc and to be near to DH and I

That was the easy part As symtoms arose and she was diagnosed she hedged on the meds being given to her, help with dressing and bathing
She kept teling me she can do it herself- cried and kept saying she would do better. I felt like I was beating her up !!

With time she got better at this all but I think as she has declined the acceptance got easier

Then after a second pre cancer on her face her Dr told her no sun She loves to sit out in the good weather I kept telling her and she kept doing it and would give the companions a hard time when they encouraged her to got back in. Through The message board I realized she wasnt being unruly but forgot the rule!

I will pray that the things get easier for all of you. It's so hard when they are your kids and you have to stand tough!

God Bless
Ann

Thanks everyone for your "gut" reactions and words of encouragement. It strikes me that we are all in such a similar place--one of great frustration, fear, helplessness, and love--regardless of where our loved ones are. It so helps to have people standing by me on this shaky, shaky ground!
Love ya!
Carol

OK, Tough Love it is.
Last evening he knocked his sandwich out of his
caregiver's hands when she so kindly delivered it
to his apartment (because he won't eat with, you got it,
"those people" in the dining room). Yells at her (not for
the first time) to get the f*#! out of his room and he
doesn't want her help. Goes out later for his walk.
She is doing her job shadowing him. He's walking so
fast she can hardly keep up. This is next to the local
highway--45 MPH speed limit--mind you. A cop pulls
over and asks if she (Joe Ann--God Bless You!) needs
some help. She manages to get Daddy back to the
building, basically racing in his trail of dust.
I show up.
We have our tough love talk.
I will do it every day, if need be.
I hate this.

Carol,

I am so sorry for what you are going through. Bless that aide's heart -- she is an angel to keep such close tabs on dad.

I was soooo fortunate that my mom never wandered. I can only guess how frantic you must feel when he takes off on his own.

Peace and blessings to you and prayers for lots of strength to get through this very difficult time.

Carol:

I'm sorry your Dad is having such a hard time adjusting to the ALF. I went through this with Mom, but she wasn't nearly as bad. I did have to order that she not be allowed outside alone and she still grumbles about that, but after her fall outside last year I had to say NO.

Mom's ALF will not allow residents to take meals in their apartments unless they are ill. They require residents to be fully dressed and take all meals in the dining room. This does two things, it forces the recluses out of their apartments and it forces them to get dressed. At first I thought it was pretty harsh, but I have come to realize how important it is. It really helped Mom 'get with the program'.

You say your Dad is angry, with this disease it is not anger as you and I know it, it is irrational anger. Have you considered speaking to your Father's physician about drugs for agitation and anger? They really do help. My Mom takes a very low dose of Seroquel every night and it has made a real improvement in her quality of life by controlling her agitation. She isn't dopey, she sleeps through the night, and wakes in a good mood.

You may need to take a few days off and not visit, let the staff work with your Dad. I remember someone else having diffculty with settling in and others recommending that daily visits may be hindering the settling in process. I liken it to taking your child to school for the first time, the teachers don't usually let parents visit the classroom until up in October when all of the children have adjusted to the new routine and won't be unsettled by their parent's presence.

Thanks, guys,
Daddy has been relatively settled the last couple of days.
I'm not going over unless I get an emergency call or he is
acting up to such a point that we have to have another one
of our talks. Otherwise, I only see him on weekends and
maybe once or twice during the week.
I'm actually really impressed with Dad's ALF that they are
so willing to bend over backwards for him. When his private
caregiver is not there, they do their best to have one of their
caregivers shadow him if he's going out for a walk. They
actually do this at no extra charge. Re meals, I know what
you mean about "getting with the program," and joining the
other residents, at least for meals, is a big part of that. On
the other hand, that's the type of stuff that gets his dander up.
He wants to make his own decisions to the absolute extent
(and then some) that he is able. And I want that for him,
as well.
Re drugs, his neurologist prescribed Haldol (sp?) during our
last visit. It should come in the mail next week. He is to take
it as needed for agitation. We're going to have the caregiver
give it to him when she arrives around 2:00 and, hopefully,
that will help with these problem hours from afternoon to
evening.
Thanks so much for your input!
Carol