Dad wants to move out of assisted living.

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..so I had a painful conversation (if you can call it that) with my Dad this morning. After MUCH personal mental anguish and guilt, I decided it was best to move Dad to full AL in May. Since then, his oxygen is managed well, his meds are on time, and they even prevent him from calling me every time something goes wrong.

This morning, I was met with a tearful senior who stated that he hates the facility. Is that just the disease talking? Due to his eyesight (legally blind), advanced age and dementia, he struggles with ANYTHING electronic including the HVAC system (it doesn't help that he's only comfortable at 85 degrees or above), remote control, etc. which requires constant input from either me or the staff. Any attempt that I have made to simplify things go ignored on his part because he's DETERMINED to prove that he can do things himself. The result is either a boiling hot room or igloo or a TV that gets "stuck" on a channel because he's afraid to touch the remote control again. I can't tell you how many times I've come to visit and he's sitting in his room with a winter coat on staring at a black TV screen because he refuses to pull the cord and have a staff member to help him.

Another part of me thinks this is his ploy to try to get me to pick up the slack, but thanks to CoDependent Anonymous meetings (a God send), I've learned how to draw boundaries and even NOT answer his repeated phone calls because I need a life of my own and we pay a TON of money for him to get help he refuses. So is there anything I can do? Moving him is NOT an option (not going down the road of doing everything again), and I think this is a beast of his own making. How can I encourage him to accept the help that we shell out money for every month? I truly believe if he would let the staff help him some of his self-imposed anxiety will dissipate. HELP!!!

Speaking from my experience with my own mom, some people just live to complain and refuse help that could make their lives better. My mom wallows in her self-imposed misery, refusing to make any friends, dining alone and only at lunch (she eats breakfast and dinner alone in her room) and refusing simple help like washing her eyeglasses. Then she complains that she hates dirty glasses and it somehow is my fault because I'm only there two to three times a week. She only trusts me to wash them. It'll drive you crazy if you let them be in charge of your emotions.

In the 5 1/2 years I have been on this crazy roller coaster ride with her, I've realized I am not responsible for her happiness. I have stepped back emotionally in order to protect myself. Her complaining and misery I feel gives her a sense of control over her life. It used to control me, but no longer to the extent it once did.

Sometimes, tinyblu, the only thing you can do is step back for yourself. Dad will be unhappy no matter what you do. He's angry about the place he is in life and there is nothing you can do to change that. ((Hugs)) It is a very hard path we all find ourselves on in this journey.

YOU'RE paying for the facility? Please tell me that you're using dad's money!!

My mother kept calling us, the light bulb was out, etc. CALL THE STAFF, Mom! Just kept telling her, mom, you're paying $5000 a month to live here. You have staff. Use them. she got the message.

It sounds like your dad is a lot hardheaded and manipulative. But I wouldn't cave on this, or you get sucked back in.

"No" is a complete sentence, dear. So is "I couldn't possibly do that".

Also, I highly recommend a geriatric psychiatric to advise on meds for agitation and anxiety. That helped my mom enormously. A lot of her anxiety was about "what will they think of me if I pull the cord?" kind of thing. Meds helped with that.

Oh! And good for you for going to the CoDependent Anonymous meetings. I wish I had something like that in my area. Stay strong. You are doing the right thing making sure he is safe and cared for to the extent that he will allow.

Barb, Oh how wish I could get my mom treated for anxiety. She flat out refuses any medical care and would certainly not take depression meds. She fears meds and sees them as a moral character sign of weakness. *sigh* So I take them for the both of us. :)

Tinyblu, some of this reminds me of my own Dad, he was shy about asking for help, and will try to do on his own. I would also find Dad's TV not working because he had pushed too many buttons on the remote, then he would dig out the TV's own remote and mess with that. I told him its ok to call the front desk and tell the Receptionist your remote doesn't work. Maintenance is use to that.

Once Dad was moved to Assisted Living/Memory Care from Independent Living, there were less issues as an Aide would check on him hourly and ask if he needed any help. Dad wasn't afraid to tell her the TV doesn't work, or the room was too cold, etc. Dad's budge could afford his favorite paid caregiver to be there for 4 hours a day, he could talk to her about anything, and she was very resourceful.

Dad loved where he lived, he was so happy to be out of that big house he owned and trying to climb ladders at 94.

Due to his dementia, I wouldn't assign intent, manipulation, planning or stubbornness on his part. It may appear that he is refusing to accept help and that he is being difficult on purpose. But, with dementia, the brain is incapable of some things. I think I would try to accept that is how he is and stop getting frustrated. Resistance to care is common with dementia.

Also, with dementia, pulling a cord may not be possible for them to do, because their ability to initiate things leaves. They just don't think of pulling the cord. Signs, reminders, etc. may not help.

Here's a link from this site that might be helpful as well.
https://www.agingcare.com/articles/dementia-behavior-manipulation-154554.htm

As dementia progresses, it's not realistic to think that the person will suddenly understand, get it and accept things. He may progress to a stage where he does not resist assistance, but resisting assistance is quite common with dementia. It's up to the staff to take care of things. I wouldn't try to take on those duties. That's why they are there. They can't force things on him, but, if they don't seem to be skilled with keeping him comfortable, I might explore a Memory Care facility. In Memory Care, they know how to handle issues like resistance, from what I have seen. It doesn't mean that there is necessarily anything wrong with your father. That's how a lot of people are. I might explore it with his doctor, to see if his meds need adjusting. Is he content, other than complaining of wanting to leave? I'd also keep in mind that as they progress, they may no longer be interested in watching tv.

Thanks everyone.

Dad's VA money covers his stay at AL, but it is a VERY tight budget.

We also have dad on anxiety medications. They tell him they are vitamins at the AL because he would refuse them.

He keeps saying he's afraid, so I do think that part may have to do with the dementia. I think he knows something is wrong, but he can't quite put his finger on what's going on. I can certainly understand the anxiety from that aspect. His newest complaint is that the vitamins make him sleepy (a welcome side effect, trust me).

As for CoDa, it has been a wonderful resource. Shameless plug: if you have a meeting in your area, I HIGHLY recommend going. I've been taking care of dad since I was 6 years old in one way or another (and his multiple wives and other children that don't help AT ALL... yet I digress).

I found a meeting at coda.org if anyone is interested.

...so the line is drawn in the sand, and I have given up on trying to convince Dad to do anything any differently. If he wants to sit in the room alone and be a grump, not my problem. Now that he's in a safe place I'm looking for a better apartment about 30 minutes away from the AL. It's time to live for me. He's been here 86 years and counting... I've only been here 40. I've done more than my share and I'm OK with that.

I couldn't make it without the support of other caregivers that "get it". Thanks!

So here's my take on how to handle the emotions. We want our loved one to be happy, and to be satisfied enough not to complain much. We do lots of things to fix the situation, if we can. We feel bad about ourselves if we can't solve their problems, but getting ready to die is not a problem we can solve.

Your LO is unhappy. Maybe all you can do is to give him sympathy and compassion. I know you feel it, but you may not express it. (Speaking about the hypothetical caregiver, of course, not you.) What has worked for me sometimes is to paste a sad look on my face, gaze into his eyes, and say, "I get it. Your life kinda sucks these days. I'm so sorry. I wish I had a magic wand and could fix it."

If his complaints are illogical and unjust, agree with him anyway. Don't buy him a gun so he can get revenge, but really listen and accept what he says. Don't try to talk him out of his feelings.

That can be hard to do, but if you try it and it works, it will get easier. I personally find my hardships easier to endure if others know how much I dramatically suffer. Best wishes.

First of all Tinyblu, dementia is NOT of one's own making. The fact he cannot operate the remote control further indicates he does not have the mental connections to know what to do . My husband is the same way and will press buttons without knowing what their function is. I come into the room and look at the t.v. and correct the situation. I suggest having staff check his room for temperature and t.v. operating every 30 mins. or hour. A cover over the thermostat would prevent him from changing the temp and it would be maintained. Find out which programs he likes and tell staff to put the channel on them (westerns, football, golf, history, etc.). With dementia, it doesn't really matter which program he is watching because I guarantee you he cannot follow a storyline and forgets what was said minutes beforehand. Calm down! YOU have done the best thing for him and you (putting him in the ALF), and recognize you will have to stop being a "child" in your own mind and start being the adult who takes care of the parent. The roles are reversed and you have to bury those feelings of helplessness that you felt when you were a child and daddy rescued you. This situation will not last forever, so try to find a little humor in your life because being a caregiver is no cake walk. It requires you to be strong, and not listen to the pleas of someone who knows how to press your buttons. After all, he had decades to perfect the dance you two play, and now you have to change the rules. Just say, "No!" more often.

We just went through these issues with my wife's father, he was blind, deaf and could barely walk. The AL we sent him and my mother-in-law to has the best reputation in the state. Since we live about 45 minutes away from the facility it was very, very hard for us to run up to the small city to take care of business.
My FIL did not like living there but he did realize that it was far better than a nursing home. He recently passed away from pneumonia. He was 93 and in very poor health.
My MIL has dementia and hardly knows he has gone. We had more problem with her. I hate to say this but dementia has been a blessing.
She suffered from IBS and it happened 3 to 5 time daily. The local doctor put her on cholestyramine, yes, I know it is a cholesterol medication, but recently they have found it control IBS, My wife suffered from IBS as well and she started using the cholestyramine as well and her IBS is under control as well.
Now my MIL is socializing with the other ladies in the AL going out and taking part in activities.
It is my opinion issues with pain and suffering can make a person hard to deal with. It is like a wounded animal they lash out at their loved ones and others. As the son-in-law of the family, I have to keep my nose out of my wife's business. But as I sit back and observe I can see the issues clearly.

skyhigh, excellent point, I think it takes someone not that closely associated with a patient to see the forest for the trees.