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This has been a challenging week to say the least. Dad has been having more panic attacks due to his outright refusal to cool off his room. I'm not sure if it's the dementia or plain old stubborness, but whenever the weather gets warm, we start the thermostat battles. It happens in the winter as well, but not as badly. Dad is legally blind and can not see how to operate the HVAC unit in his room. As a result, he will often keep it turned completely off with the windows and doors closed. Needless to say, it gets very stuffy in his room which exacerbates his breathing which leads to a panic attack. This can go on for hours, and Dad will refuse to allow the AL staff to turn on the HVAC unit or give him a Seroquel to calm him down. He's equated the Seroquel to a "sleeping pill", and he accuses the staff of trying to drug him and he gets really combative. Now it's getting worse because he will get on his motorized scooter and ride up and down the halls of the ALF to "cool off". This often involves trying to engage disinterested workers in conversations (repetitive of course) or asking them to explain why he's so "uptight". I've tried to convince Dad to take the medicine when they offer it, but he's a tough old man and won't be made to do anything he doesn't want to do, including pulling the cord if he needs help with the HVAC. He's starting to get quite the reputation as the resident nuisance and some staff members are going to recommend him to be moved. How in the world am I going to explain this to Dad? Furthermore, where am I going to find the time or money to move him AGAIN? UGH! It's like I can NOT catch a break. This whole situation is literally sucking the life out of me. I just want it to be over if not for him, maybe for me. I'm just tired of it all.

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You can hire a caregiver trained in his requirements that will be with him a certain number of hours a day. This can be you, paid as a trained Individual Provider or, if it is not your thing you can hire from a facility. They do limit his income to $900 a month, anything over that goes to the caregiver. If his income is less than that, the state pays. I have been a caregiver for both parents. I am paid 141 hours a month but I am sure your dad would qualify for much more. Check into it.
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Thanks everyone. This is literally putting gray hairs in my head.

So, the battle continues with the psych. She said she won't prescribe an additional benzo because Dad is so thin (122 at 6' 1") and already has COPD. In her opinion, this could lead to death (????)

She went on and on about how a SSRI (those days as a drug rep paid off) anti-depressant would take weeks to work... I had to let her hear the desperate voice mails from my dad (in tears, gasping for air, begging me to come and help him at 10 PM) in order to get a reluctant I'll get back to you.

So, why does Hospice not have a problem suggesting Ativan?

Speaking of, I am in the process of getting a hospice referral from Dad's pulmonologist, but the VA requires there to be a "six month" window for death. My Dad is a tough old geyser. He'll try to outlive all of us. We'll just have to wait and see...

I also researched the VA Nursing Home that is 1.5 hours away. That would definitely be a last resort. It looks like a hospital with bingo. Dad would be miserable there and I'm not sure I could live with the guilt.

Memory Care averages about $6K a month. Dad's VA benefits leave him at about a $500 deficit as is that I cover with my second job. We just can't afford it.

There are still no openings for the Medical Foster Homes in our city and folks tend to stay in them until the end of life...

I've never been cut out for caregiving, and home care was a nightmare, but I may just have to bite the bullet and rent a home and try to take care of Dad myself... My head is spinning...
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To the person who said they've never seen a psych prescribe more than one drug -- not so. My husband is bipolar. He's always been on lithium and - 'and' originally being thorazine/melloril and now seroquel. In his last hospitalization, they also added klonopin (which has been a big help, actually). It's not unusual to work to find a combination of meds that work together.
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Seroquel is hard to hide -- take it from someone who has given it to her bipolar husband for over 15 years. When he goes through periods where he won't take it, I'm stuck. It's got a very strong flavor and it's not particularly pleasant (or so I'm told my his psychiatrist).
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Tiny, you've done the very best for your dad. As folks have indicated above, it's time to get him him to a higher level of VA covered care.
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Tinyblu, I'm so sorry. My mom went through this as an only child. She had me and my sister but we were not there as consistently as she was and the majority of the burden was on her shoulders. It is SO hard and none of this is your fault. The way your dad was, he is very, very lucky that you are looking out for him. You have done a great job for him.

I wouldn't move him till he is evaluated for hospice. Those ladies have been to a lot of the facilities; I wonder if they'd have any insights about options for your dad.

Does your dad get aid and attendance from the VA?

Anyhow, I know you feel alone and that this is a mess that is hard to find a way out of. But you cannot feel like this is your doing. America is one of the wealthiest countries on earth and yet we want our elderly to be in poverty before we chip in as a society to help care for them; it is crazy. I hope our society takes a more moral and compassionate view toward aging and caregiving, and fast, but in the meantime, you are doing way more than so many people do for their loved ones. You should not have to work 2 jobs to make sure your dad is safe. It makes me angry that so many women are pushed into a corner where they are risking their own health and financial well-being. Your dad is a vet, who sustained damage to his person in the service of our country. It is shameful that there aren't enough quality facilities to provide housing for people like him. We went through it with my grandpa. It's not right but it is not your fault.
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It sounds like you have done an exceptional job at advocating for your father. To me, terms like putting people away is something from the olden days. Placing seniors and the disabled in facilities where they can receive proper care and protection is a super thing to do for a loved one. I'd take pride in that. You have bent over backwards to do the right thing.

I would consider that it's possible that so much of the stress you have encountered it due to the disruption your father has had in the places he has resided. I'd explore if his level of care is just higher than either of you believe. Once my LO went into MC, she was much more relaxed and content. When she was in a regular AL facility, it was a real daily struggle, because her level of care was too high for the facility. Her dementia made the other residents look at her as odd. She couldn't fit in.

If your dad could be placed somewhere that could manage his care, it might be less stressful for both of you.

While you may see residents in Memory Care who exhibit signs that you find uncomfortable, most people in MC do that on occasion. I'd consider that your father may do that as well and that there are usually residents from all levels of progression in a MC. I wouldn't let that deter me.

I've never heard of a psychiatrist not prescribing more than one med for a disorder, if that one med is not working. So bizarre. I hope you can get a new doctor.....................I'm editing my post because it occurred to me that maybe, the psychiatrist doesn't think that it's your dad's problem that needs adjusting.  I'd ask the psychiatrist the reason for his position and if he thinks a higher level of care would make a difference. 
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Hold on TinyBlu - you promised to take care of him. You promised not to abandon him. You promised not to "put him away." You did not say that you would sacrifice your entire life to keep the two of you close. That's what it sounds like you have already done. If he were in his right mind, he would not want you to sacrifice all this for him. He would be sacrificing for you to live better, as a loving father. You know that deep in your heart. You have done everything you possibly could, sacrificed more than you should, to keep him the best way you know how. Now it's time for him to go to the best place that works, which is still in keeping with the best way you know how. You won't be putting him away if you stay in contact. There's a Teepa Snow youtube about this very promise.

You are still doing an outstanding job of taking care of him. Once you get on the upside of this and find transportation -even if that's a bike! - you can look for work in that direction and move out of your neighborhood. Your dad would not want you to be there, I am sure. It's time to put YOU first, like your dad would put you first. To take care of him well, you must take care of yourself first. Hugs!!
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...and I just called a few group homes... COMPLETELY out of our budget. I am working two jobs now to cover what my Dad's VA benefits won't cover. He makes "too much money" to qualify for Medicaid facilities which are disgusting by the way, so I don't know what to do.

I sold my car and lost my home after Dad got sick. I think I need a bullet proof vest in my neighborhood, but the rent is cheap. I have budgeted myself down as low as I can go. It's a crying shame that we literally can't afford for Dad to be sick.

As much as I hate to do it, I'm going to have to send Dad to a VA nursing home which is 45 minutes at minimum away from where I live and over 1.5 hours from my job. I promised him I wouldn't leave him or put him away. I can't do anything right...
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I've actually had to take ANOTHER day off to try to get some other resources for Dad. I've actually reached out to a social worker at the VA to "report" the psychiatrist. Sadly, with two jobs which I NEED to support Dad and myself, I don't have the time to dig into this like I should.

It literally takes HOURS on the phone with the VA only to get absolutely nowhere, and that's all we can afford.

As for Hospice, I don't think you necessarily have to be on your deathbed to receive services - at least I hope not. I'm just looking for someone that will actually HELP my Dad.

I have placed Dad on a waiting list for a Medical Foster Home through the VA, but it could be years before we find one. I think that setting would be much less stressful for the both of us.

Incidentally, I have been placed on a 3 day non-paid suspension from my part time job for yelling back at a customer. My stress level is through the roof. I'm not sleeping... eating everything in site... I cry uncontrollably... I'm starting to worry about myself. I can't take this anymore. I just wish everything would end. I can't do this anymore...
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Tinyblu, is your dad in the Home Based Primary Care program through the VA? I think they (doctors, nurses, aides, etc.) will go see people at assisted living; it might be extra people who can check on your dad. They might also be more familiar with geriatric patients. I'm not sure if they would work in tandem with hospice but it might be worth looking at.

I hope the ALF will keep working with you and your dad!
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If the psychiatrist won't consider another med then please try to find another provider

Seroquel didn't improve my mom's agitation and the protocol is to keep increasing it

The neurologist was quite willing to switch and now she's on risperdal which does not have the same drowsiness effect
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Tinyblu- I don't want to take credit where it's not due - but I know I suggested hospice to you just a short time ago - if nothing else they will likely be able to give a solid assessment of your fathers current condition and what you can expect in the near future. And yes, at least the hospice that tended to both my parents were very liberal with the Ativan- often an excellent 
choice for "taking the edge off".

The other thing I've mentioned to you a couple of times is to line up a SNF as a backup. I have to say - based on the things you've said in your posts - your frustration and wariness- I pretty much saw this coming. I'm not trying to be a know-it-all smarta**, it's just that I've been there. The Director of the AL where my mom lived called me in for "the talk" before my mom even reached two weeks there. As I often say - assisted living isn't all that assisted. As long as the resident can pay all the fees for the necessary add-on services AND doesn't cause too much trouble things are rosey as h*ll - anything less than that - in my experience - well, they will pull out the old "your loved one needs more care than we can provide" and if your lucky, you get a bit of time to find a new place.

Does it have to be a Memory Care facility? Have you considered a group home setting for your dad? The much smaller environment of a group home - usually four to six residents might make it easier for you father to receive more supervision without making him feel uneasy and/or hostile about it - most likely it would just happen naturally due to the setting. Just a thought...
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I think hospice is a great idea! With him on such high o2, surely he's eligible. Hospice has a much longer list of drugs to keep people happy. Mthr has been on service for about 2 years; although she's taken several turns for the worse, the cancer has not taken her yet. Hospice has a weekly nurse practitioner visit with her and they come to her... They have her meds right for a change.
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About the thermostat - I worked in an office where this was an issue and finally the maintenance staff quietly advised me not to worry about it - they disconnected the thermostat, set the temperature to be comfortable for most people - but left the thermostat itself on the wall and let people think they were altering it. They told me they saved themselves a lot of time and trouble that way.
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Hospice and all the medications they provide are covered by Medicare.

Is your dad more apt to take an antidepressant or a drug from hospice than he is to take the seroquel?

Can't the ALF (with out permission) simply keep his room at a comfortable, safe level without asking him?
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The VA psychiatrist won't put him on an antidepressant? Why is that? What is the mechanism to challenge her refusal to properly medicate his anxiety and depression?
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Hospice? Does your father show signs of being at the end of his life?
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I'm definitely going to try the chocolate ice cream idea. Dad does love his sweets.

...and I agree that the whole thermostat thing probably has more cognitive undertones than anything. I honestly don't think that Dad understands the numbers.

I have gone with Dad to Memory Care facilities and they are pretty grim. Dad really doesn't want to go there and I would feel awful if I had to place him there. Of the three we visited, there were people sitting in the halls in wheelchairs looking kind of out of it, or people randomly walking up and asking if I was their mother. One woman was dragging this doll around and talking to it... it was truly heart breaking, and I witnessed staff members yelling at patients. Unless I absolutely have to, I honestly don't want to put Dad in a place like that.

His psychiatrist flat out refuses to give Dad anything else outside of the Seroquel, and I can't afford a civilian doctor, so we're stuck. Each time I have presented documentation of Dad's increased anxiety , she just ups the Seroquel (which is actually contraindicated in dementia patients). It's frustrating that she won't even consider something else for him.

Without the scooter, Dad would not be able to get around. He can't walk more than a few feet without being completely out of breath. He wouldn't be able to operate a manual wheelchair, and the ALF makes Dad complete a "driving test" every six months to ensure safety. He can't see details well, but general shapes and REALLY large writing. Without the scooter, Dad would be completely bound to his room.

...so I'm going to try to get the VA doc to do a referral for hospice. It's my understanding that they would most likely suggest something outside of the Seroquel for Dad, and if I have to work even more hours to pay for it -- so be it.

This can't go on...poor guy.
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Is your dad in a Memory Care unit? If not, I'd explore them for your dad. They are better trained to handle challenging behavior like your dad's. Resisting care, not cooperating is actually pretty common for dementia patients. I wouldn't bother with blaming him for being stubborn. It's not his fault. But, when the staff is not equipped to manage that behavior, they may just not be able to handle it.  ALSO, ask to have a team meeting at the ALF and see if you can put your heads together and devise a plan to help with dad so he can stay, but, I would ask them if they think Memory Care would be a better fit. 

I'd actually wonder if your dad would be able to regulate the thermostat, even if he could see it. I say this, because of all the LTC places that I have visited, those who have dementia, are not able to do it. They may be able to read the number 72, but, it means nothing to do them. And, they may cut off a switch and totally not remember doing it. If the regulation of the the temp was just visual, then he would allow someone else to help, but, I would question if he has the ability to pull a cord for help with the air. Eventually, there is a loss of initiative. I'd explore if that is what is happening and if so, the same thing would happen with other air conditions too in other facilities.

I'd also ask his doctor to review his medication. Your dad gets that the Seroquel makes him drowsy, So, he doesn't want to take it. That's actually understandable. Taking it at bedtime, is one thing, but, in the day? I'd ask a doctor or psychiatrist for a daily medication for anxiety that does NOT cause drowsiness. One that he can't even tell he took. It just takes the edge off things and the person is more content, yet not groggy. My LO takes Cymbalta and it did wonders for her, but, there are many options.

I would also reconsider the scooter. Is there some reason that Dad can't get himself around in a manual wheelchair? He's on oxygen, right? Maybe, that would be too much for him, but, I'd really evaluate the safety of the scooter, if he can't see well.

I hope you find some things that help and work for your dad.
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Tinyblu, does your Dad like chocolate ice cream after dinner [not at the social, my Dad didn't join in, either]?

My late Mom refused crushed pills in applesauce as she didn't like applesauce.... so the nurse tried using chocolate ice cream... bingo, we have a winner !!! What was amusing later on, my Mom wouldn't eat regular chocolate ice cream [without the pill crushed in it] as she thought it tasted funny :P

For your Dad's diet, he's doing the right thing not overloading himself on big meals since he's getting little exercise... good for him :) I always figure, let an elder eat what they want, at least they are eating.
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Dad has been at this facility two years total: He spent about a year on the Independent side and was moved to Assisted after being placed on 24 hour oxygen.

Hahaha! Yes, Dad drives a motorized scooter while legally blind. He has no tunnel vision. The optic nerve in his left eye was severed in the Navy and his right eye has declined drastically over the years. He now has cataracts to add to it. He can distinguish shapes and can make out features if he stands really close to a person and move his head from side to side to piece together several peripheral images. This kinda freaks people out so he tends to keep his eyes cast downward.

Reading is pretty much out of the question, but for a guy with limitations, he does well.

I may try to get the ALF to hide a crushed pill in soup. He's a picky eater and doesn't eat much at all. He's a sandwich guy because they are easy for him to handle. His diet literally consists of a bacon and egg sandwich in the morning, a hamburger and chips for lunch, and a cup of soup for dinner. That's IT.

He doesn't eat pudding or applesauce, so unless the kitchen can put the pill in soup, that won't work. He gets combative if they try to get him to eat at the ice cream social. He REALLY doesn't want to be forced to do anything.

I really don't want the ALF to dismiss him. He loves it there.

Also, sorry about the spacing. Something is going on with posting. All of my paragraphs disappear.
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Your dad is legally blind yet drives a motorized scooter?

If he won't take a pill that he obviously needs and that you need him to take in order to remain there as a resident, perhaps you can crush it and feed it to him in some pudding or applesauce? Check with the pharmacist.

Also, if he is feeling rushed to take the pill that is likely contributing to his refusal. Make sure the staff understand that he needs a calm environment in order to take the pill and add it into his medication regimen. Check with his doctor first.

You need him to comply. His brain no longer works. You have to do what is best for him and a move is not what is best for him. Do what you need to do to prevent the ALF from dismissing him.
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Tinyblu, ah the battle of the themostat. My Dad had the same issue... any time I came into his Independent Living apartment I had to make it cooler... his private caregiver said she was ready to shed her clothes it was so hot. She would even crack open the windows in the bedroom and in Dad's den just to get some air into the place.

Turned out Dad's weekday caregiver had noticed when the A/C is on, it would blow out air from the ceiling vent which in turn would bounce off the wall and back onto Dad if he sat in his recliner. Boy, was she right. Moving the recliner wasn't an option as Dad really enjoyed looking out the window while he sat there. Maintenance was called in and blocked that side of the ceiling vent. That worked great.....

But Dad was in such a habit of making the rooms warm because my late Mom was always so cold. He just couldn't break that habit :(

When Dad lived at his house, he use to go around with a sleeveless undershirt and walking shorts. Mom was bundled like she was living in the Arctic. Dad felt he couldn't do that living in IL, which I understood.

As for the thermostat itself, the digital numbers were very tiny in that tinted lime green, even I had an issue reading them.... so whomever bought those thermostats for the facility wasn't thinking like an elder with poor eyesight.

Tinyblu, how long has your Dad been in this continuing care facility?
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