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.
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.
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.
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.
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.
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.
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.
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.
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.
Most elders are really attached to their house. My Dad, thankfully, wasn't. It wasn't like it was a handed down family home. Once my Mom passed, Dad was ready to downsize into something more comfortable. He was tired of paying real estate taxes, hiring people to fix things he use to be able to fix, hiring someone to mow the lawn, shovel the snow, and major fix-it items such as a new sump-pump or new refrigerator, etc.
The largest cost were Dad's caregivers, worth every penny, but the cost was draining Dad's savings. He liked the idea that moving into senior living would be soooo much cheaper. Saving money was big with my Dad.
Dad's Assisted Living/Memory Care place was great. Dad really loved the place, it was cheery and pleasant, the Staff was attentive, and boy was the food great :) Dad could even budget to have his 2 favorite caregivers take turns working there in the mornings, it gave him a good routine.
Lock down?? That was only in the evenings, no different then us locking our front doors at night. During the day, the front desk person knew who was ok to go outside and who needed someone with them. The place had several sun rooms if one wanted to enjoy the sun-shine. Places like this depends on where one lives. Seems like the large metro areas are filled with such places that feel like a hotel when you want in.
Thank you so much for the kind words.
But I'm confused and I'm hoping you can shed some light on your view.
Sunbrooke's dad has Alzheimer's but you think a Skilled Nursing Facility is a better fit than a Memory Care facility? You said the MC isn't prepared to handle a patient "when they go downhill fast." Would you elaborate what that means? Do you mean the level of supervision or during the active dying process?
I understand you feel you need to be there everyday day to oversee care that isn't being done. Would you kindly tell us what the MC isn't doing? Maybe I've missed something in my moms' facility that I should be looking into.
(Please don't think I'm writing sarcastically, I really am interested in your particular situation.)
I guess I looked at MC's as locked facilities for those with dementias (whatever type) but who were basically physically well. Does your loved one require more physical care?
Thanks ahead of time for enlightening me.
Sue
His memory issues, before he was diagnosed and even after, have caused very serious issues within our long-distance family who I did not have much contact with before my stepmother died. i.e. he would tell them one thing "I want to move to XXX" and they would get scrambling making plans, even though he told me he didn't want to move no matter what one week prior. Because I knew he was so back and forth in what he would think and say, I did not move ahead with a huge cross-continent move which would have required all of his funds sent ahead of him to purchase a home in one of his other adult children's names. The whole thing felt way too risky on every level. Anyway, lawyers got involved and it's been one of the worst times ever. All that to say he is not making any good decisions and his memory issues have created serious havoc.
Good to hear the pros and cons of various MCs, SNF, etc. Does anyone have experience with actual HOUSES that have a small number of seniors (6-10) in their care?
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.
As for me, I must admit I am not a care-taker. Instead I am a 70 year old with no family living in this country so am alone. I fall into the poverty category unfortunately as I have many chronic illnesses and live only on disability. Lately, I have been trying to find out what my options would be should I get seriously ill and not be able to take care of myself. I called around everywhere I could think of with very little hope. Everything is for profit here. I considered going back to England but would find the effort of giving up my home (and my cats) too overwhelming and would be hardy able to afford to live there either.
Today, I found a leaflet from a home care agency attached to the local hospital who take care in the home 24/7. I called them up and was told that I could have their services if and when I needed it 100% covered by Medicare, if approved by my doctor of course. I have United Health Care Advantage Plan and it seems to pay for all this like Medicare. I am wondering if this system would apply to you and relieve you of the expense of private agency care? Perhaps I am on the wrong track seeing as you have looked into this more than I have, but you might like to investigate it for your own piece of mind.
You can also apply for free financial aid to get your financial status up and running.
We are very lucky to have an activity center here that provides many different resources like meals, medical equipment, weekly classes and programs, blood pressure checks, and even respite care for people who need a break like you.
Also, your father may well be a candidate for meals-on-wheels, and many other programs out there. Try Health and Human Services for details. You will be amazed at what is available for people at home. He will not die if he is put in AL as others have pointed out, but these arrangements might save you some aggravation while keeping him in his home.
As everyone here has said, you have a husband and life. If you want to keep your marriage together you need to move your dad close to you. NOT IN WITH YOU!
Remember this, he is going to go down hill no matter where he is. Try not to feel guilty because you can't make him live forever. None of us are going to get out of this alive.
You could opt for Memory Care now then he will not have to adjust a few months? or a year or two down the road. Problem with that is if he is high functioning now he may really not fit in in a Memory Care setting.
Another option would be to go Assisted Living that has a Memory Care wing on site. This way he can live more independently then move to Memory Care when he can no longer function on his own.
The problem with this is he will have to move again and get used to new staff and a new routine. And that can be difficult for anyone.
Your third option that I think is not an option would be to continue as things are until some catastrophic event forces you to make a decision. This is what usually happens and there is a stop between home and Memory Care called Rehab. Depending on how severe the dementia is will determine how well he would do in rehab.
Your parents raised you to be independent, have a family. Part of the process is leaving your parents for your spouse. This is what is important in your life now.
Yes it is difficult to see your parents declining. I think part of that is we then realize that we also are getting older and these same decisions will be made for ourselves in the very near future. And we don't like to admit that! (Great way to bring this subject up with spouse and your own kids...how do you want them to deal with you in the same situation. Do you want them to do for you what you are doing now?)
If your Dad is aware enough you need to have a good heart to heart talk and say that you can not continue the way things are.
Also if you consider that the cost of AL he would get meals, he would have no gas, electric, homeowners insurance to pay. Memory Care would be a bit more simply for the fact that more is done for each resident.
You might want to talk to an Elder Care Attorney to discuss options for trusts, application for Medicaid if that may be a possibility.
Also if your Dad is a Veteran you should determine if he qualifies for assistance through the VA.
If the option of moving him in with you, or keeping him in his home is out, then move him to a facility near you. So you can visit and check in on him.
Explain to him how much you love him and would like him to live close to you. Maybe find a good facility and take him to visit, so he can see. Fear of the unknown restricts peoples decisions. If he sees its a good place he might not be so afraid and he might Lord willing want it.
I am so sorry for your situation, it is a tough one. I understand too the guilt you are afraid of. But I believe there is an answer that will be best for all of you, hang in there.
May God bless you with the answer you need.
I will pray for you.