The ALF May Dismiss Dad

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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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