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.
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.
Lots of details later, we sleep better knowing my sweet mom is safe, fed and warm. We’re 250 miles away. She gets good care. She chose this AL years ago as the one she wanted if it ever came to that.
My dad won’t leave his house. But he’s still functioning and is undiagnosed for dementia. He has a Life Alert button, a nurse and a PT come in. He’s good for now (it’ll change).
I’ve read doing things like making the new digs resemble the real living-bedroom-sitting room at home look by using his furniture, etc.
Also going for lunch at the facility to meet people and just gradually get the client to like it there.
I’ve also heard that some will complain no matter what.
But your marriage deserves a fair start. Your marriage, though you might not realize it, is your future life that sustains you through out your life. Give it a chance and go Assisted Living.
But based on my dad. MC places, which are basically AL with a lock don't have the resources to deal with an ALZ patient when the patient begins to go downhill fast. We tried that with my dad as the MC place was more inviting and comfortable, but they are in over their head in terms of care. I feel we are paying all this money for MC yet I have to be there every day to make sure hes getting the care he needs, and there are almost always problems. We are now going to be moving him to SNF (as a bonus, fee with VA status as hes hospice) but it would have saved so much grief and effort had we put him there to begin with.
I also understand the problem of trying to create a boundary without letting him down. I tried saying I will do X amount of work but need siblings to do some. One stepped in the other didn't. Still, I am having to say ONE day a week I need to stay away from the MC for my own sanity because if I didn't, I would be worthless before long. But that is another reason SNF is better than MC. Assuming the SNF is good, a lot less fret on your part.
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.
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.
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.
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.
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.