I am new to caregiving since my dad's wife died last summer. It's been very full on! It's affected my new marriage as I've spent half the year away from my husband (we live in a different state than my dad). It's affected my work as I have had to take months off and can't concentrate on it when there has been so much work to do for my dad, who has dementia and probable Alzheimer's. I have kept him in his home, employing various caregivers, finding housemates, managing his house and finances and health care from afar when I'm not there. I am only 40 and utterly exhausted. I have become filled with despair as I realize it's either this life or terrible grief once I lose my dad, my only parent. Husband gives me a hard time and insists I'm being foolish keeping him in his house instead of putting him in AL. My dad tells me it will kill him if he has to leave his house. Dad has several adult kids in another country who have made my life hell, despite having been mostly out of the picture for the last few decades. All of a sudden they are whipping around him like a medusa and critizing everything about his home and care, down to the type of cheese his caregivers should buy him. Not to mention they have acted in criminal ways in a supposed effort to "rescue" him, such as trying to remove all his funds from his bank, threatening to abduct him, calling APS, trying to get him to change his POA papers (I am currently POA for H + F), etc. I have reached seriously new levels of despair in the last few months, made worse by his untrustworthy long-lost family and my husband's unhappiness. I have just been trying to do what's best for my dad and in the process am giving up a lot. Now the big question I face is whether to hire FT caregiver in home, or move him to AL. He tells me it will kill him to move, could I live with myself if he just went downhill upon moving? Alternatively, it's killing my vitality and draining me to keep him in his house. Would love to hear some thoughts.

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You should opt for Assisted Living. I am caring for my DH with alzheimer's, so I understand. You should be building a marriage, not tearing it down.
Helpful Answer (16)

What are the distances involved, Sunbrook?

It's very good that you have your POAs set up.

It will not kill your father to be moved from his house.

Hiring a caregiver in your father's home will be a living nightmare for you, plus it'll be dizzyingly expensive, plus as his needs increase it will become small-nation-bankruptcy expensive AND *it* *still* *won't* *be* *enough*. Truly, your father is going to need to be placed at some point; and if it's going to happen then the sooner the better - better for him to establish a new routine and relationships while he is still able to, at least to some extent, than for him to be wheeled in later on, frightened and disoriented and utterly unable to comprehend the change.

Your husband may be relieved if you give him a defined task with a positive goal at the end of it. For example: selecting three facilities near your home, visiting them, rating them against a checklist (you'll find one here on AC if you use the Search box), and pricing them. Men (I know, I know, not all men, plus lots of women too, yes all right don't throw things at me) tend to get less angry and frustrated if you set them to work on a solution.

If you are to continue to manage your father's care (which is enough of a challenge on its own) then you have got to have him within reasonable travelling distance of your life. You matter too, you know. Plus you're going to be living with the decisions you make now for a lot longer than your Dad is, bless him and may he live forever.

I can't say anything nice about the rest of the family so - I can hear my late mother reminding me - I shan't say anything at all.
Helpful Answer (15)

       sunbrooke, I am so sorry that you are going through this. Does your father have the funds for a full time caregiver? Even with a 24/7 caregiver, you would have to keep close tabs on everything. What about respite for the caregiver? If she gets sick?
         Trying to keep your father in his home in another state does not seem tenable to me. How cognizant is your father? If you are still able to have a rationale conversation, the next time he says that AL would “kill me”, tell him, “Well, all of this is killing ME!”. So your stepmother was taking care of him before this? I wonder if that stress contributed to her demise?
        I would involve APS, and an elder care attorney to give you some options and legal counsel (to keep the ugly step-brothers off your back), and I would look into moving your father close to where you live. He probably needs Memory Care which many Assisted Living facilities have. Placing him in Memory Care will not kill him, though I agree with jjariz that it will take time for him (and you) to adjust. You are in the depths of despair because your heart is warring with your body and mind because you know this cannot go on.
          It will not be easy to make these changes when you probably had dreams of keeping your father is his home until he died. I know how that is to have to let go of a dream, but circumstances can alter our best intentions.
           Yes, one day your father will die - not today, and not because you move him into a place that is trained in dealing with dementia and Alzheimers. A place where your father can live while you advocate for him and visit him. You have a lot of steps to take, but you only have to take them one at a time.
        I am glad you have reached out here. Come back and let us know how you all are doing.
Helpful Answer (13)

Oh, right, it will kill them!

That's the call of a narcissist. It's the call of the parent who practices Fear, Obligation and Guilt. It's akin to a 4 year old saying "don't send me to school; I'll die".

I'm so sad and angry when I hear parents using this as a mechanism to control their children.
Helpful Answer (12)

You can't stop working forever. You can't ignore your husband forever. You can't ignore yourself or your health forever.

You know what you need to do but are driven by guilt not to do it.

Your first responsibility is to your husband, (Biblically), then to yourself.

There is an alternative for his care but you don't want to use it because dad says "it will kill me". It will NOT kill him. It's just the end of an era that he doesn't want to let go of.
IMO, you need to give him the best care he can receive. That would be care in an Assisted Living facility.

Don't worry about his other family. I'd stay out of contact with them since they've never visited and now are trying to rob him blind.

You need to get that arranged, comfort your dad for a few days, then go back home to your husband, rest a couple of days to collect your wits, then return to work.
Helpful Answer (11)

BTW, AL isn't a death sentence, and many folks are very happy in AL. It will take 30-60 days for him to settle in, so don't give up.
Helpful Answer (10)

If your Dad has alzheimers, assisted living will only be a stop-gap. Read up on the "myth of assisted living." What it really means is, you'll be expected to oversee a myriad of details, including medical & dental appointments, haircuts, shopping, etc. It doesn't work for demented people for very long - eventually all hell is going to break loose and you'll be scrambling around for a nursing home. I am stunned that so many parents hijack their children's lives; it is incomprehensible to me, as a mother of 3 kids. Your health is going to go down the drain and your marriage will probably go along with it.
30% of caregivers die before the person they're caring for; read that a few times. And remember this - even if your father is in a home, you will be involved - believe me. I thought I was getting my life back...but there's always an issue, always a problem. This isn't going to end until they die. In the meantime, build some iron-clad boundaries around yourself and your husband; your father is being selfish. I have a selfish father and he's drained me for the last 18 years.
Helpful Answer (9)

Move your dad to a Memory Care facility close to you. You can set a limit on the amount of times a week you visit.
You can set boundaries with the MC on what your involvement will be (take him to MD or dentist appointments, out to breakfast once a month if possible.) You are not to receive phone calls for every little thing.

I really don't see any way to handle this with you both living in different states.

As for the "letting him down" part, you can't be responsible for his emotional state. If you can provide a facility with good care, monitor his health and visit occasionally, that is being very involved. Of course he'll want more but you have other obligations too. Try not to function because of guilt. 

I can't visit my mom more than once a week. I'd like do see her more often but, because of the weird visiting hours (3-6 pm, Tues.-Sun.) I can't. I have to stop feeling bad for something I can't do. I'm watching out for her and am in contact on the phone. I have to let it go.

It's not possible to please everyone.
Helpful Answer (9)

I have been overseeing my parents for the past several years. I have used in home caregivers all this time up until last September when we determined it was unsafe for them to live at home. My mom had always said she never wanted to move out of their house. I had to take the mom role and make this decision for them. I looked at assisted living places on my own that were within a 15 minute drive for me and then narrowed it down to 1 place and then brought my parents there to check it out. I sold it to them telling them they could just test it out for a couple of months. We kept their house intact with their furnishings so they knew that door was open and they could theoretically move back. I never intended to allow this to happen. Lo and behold once they got moved into their AL facility they found it fun doing the activities and being around others. Their life had become very lonely and isolated being trapped in their house all day as it had become difficult to take them out for the caregivers as my mom is wheelchair bound. For the first few months I made it a point to go to the facility several times a week and do activities with them. I met many of the residents and then introduced my parents to them. I still manage their finances and a small staff of personal caregivers that I employ for my mom as she needs this one on one care for part of the day. But I get piece of mind knowing my parents can buzz for help 24/7 and I don t need to go over there to fix the tv or help with some chore. Life is so much better since we made this move. Please think of your health and sanity above anyone else's because if you are not in good health mentally or physically you will not be a good caregiver to anyone else. There is a light at the end of the tunnel.
Helpful Answer (8)

sunbrooke, welcome to the care giver world. Kudos to you and your husband for all you're doing for your dad. You asked if anyone had experience with small-scale care giving in houses (6-10 seniors). While I don't have that experience, I did look at several such places for my dad and liked some of them, except none of them had more than one care giver on night duty. That was a problem because my dad needed urgent care multiple times every night and I envisioned that he would suffer any time the single care giver was helping another resident.

Your questions have resulted in some good discussion and advice, some of which is conflicting, but that's due to differences in everyone's situations and experiences. Based on my experience, unless your dad has an active social life where he is currently living and is reasonably self-sufficient in spite of his late-early/mid-stage dementia, moving him close to you now will probably work out best. My dad didn't want to move from his home, but once my wife and I moved him into ours, he quickly forgot ever living anywhere else except his childhood home where he believes his parents are still living and where he still wants me to take him almost every day. After being his full-time caregiver in our home for 3.5 years we moved him into the best memory care assisted living facility we could find, which was luckily within 5-mile bicycling distance and I visit him daily. At this MC facility, the staff is more qualified and the staff/resident ratio is higher than the minimums required by the state, so I don't ever worry about my dad's needs not being met.

When I decided my wife and I could no longer provide the 24/7/365 care my dad needed (exhaustion does take its toll), I let my 7 siblings know that our dad would be moving to a facility. Some siblings suggested that paid in-home care givers would cost less, so I investigated that option and found it would cost more than twice as much as the best-in-class MC facility that I found. And in-home care would have required even more active oversight of his care by me than it does at the MC facility. And at home my dad wouldn't have the additional social benefit of being around other residents, family and staff.

You mentioned that your dad almost sold his home and purchased another in someone else's name. That would have been a huge mistake if it turns out he needed Medicaid within the following 5 years. Apparently your current DPOA(s) for finances and health care have already withstood the test of nefarious family members, otherwise I would suggest that you become his guardian and conservator. So, looks like you're well-positioned in that regard.

In short, you've probably got a tough road ahead of you, but it looks like you're well-positioned, asking the right questions, and otherwise doing everything as well as you can for your dad and then some. As others have said, don't forget to take care of yourself and your family, which will also allow you to keep the energy you'll need for overseeing your dad's care.
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