Overwhelmed, confused, scared and burnt out. Advice?

Unacceptably, a very telling number of caregivers actually die before their patients - - should that occur, what would he do without you ???

If you don't place him now, you will have to place him later if he continues to survive his condition.

Your "job" of caretaking doesn't end when your LO is placed; it's the beginning of you being able to supervise his care and advocate for him medically and humanely, while it allows you to let someone else take care of his physical needs, for you to get much-needed rest and be more prepared to serve the other functions.

We are human beings with a life and with limitations. We can mourn that we are not Saints, but that will not MAKE us Saints. There is no guilt in knowing when we have reached our limitation. Guilt belongs to felons who do evil deeds for fun. But there is grief. Don't expect to make the change without grief, and accept the grief as the normal feelings of a good person who cannot go on. I will never understand why we expect ourselves to be so omnipotent.
You are taking stock now, and somewhere within you know that this cannot go on. Please consider placement. What we go through as caregivers is so incredibly painful, because we witness the loss of those we love as their bodies live on. We come face to face with the fact that not everything can be fixed. Allow yourself your humanity, your hurt. You are doing the best you can. I am so sorry for your grief, but I think you already know what you are going to have to accomplish, and are doing anticipatory grieving for both yourself and your Dad.

He certainly does have Parkinson's related dementia symptoms. How long can you continue to care for him. I think your time is up. We all have our limits of caregiving, and although we also want to care for our LOs at home until their death, it's not safe, it's not practical, and it's not healthy. You may have been able to properly care for him with his Parkinson's, but when dementia came along, that's a game changer. The dementia symptoms will worsen to the point that your health is in jeopardy. To continue to care for him at home can cause depression and can get to the point where you become desensitized to his needs.

The right decision is to look for a care facility for him. Yes, you'll probably feel the guilt in doing that, we all do, but the question becomes where can he get the best care? He needs 24/7 care which no single person can provide. If he has the financial assets, a MC facility is where he needs to be. If no assets, then in a nursing home with MC. Making the decision to place him says you are caring for him. Knowing he's in a safe place, has the proper diet, has his meds properly managed and is monitored 24/7 can ease the guilt you can experience. In addition, you find tremendous relief in knowing he's care for.

You are enduring a very difficult thing! There is no "wrong" decision -- the caregiving arrangement must work for both parties, or it isn't working at all...so it currently isn't working in your case. To buy yourself some time you could consider an overnight caregiver to keep your father from disturbing your much needed rest. I'm not experienced with giving sleep meds to dementia patients, but maybe have this discussion with his doctor if you haven't already. The way I think about it is: if I were the one with Parkinsons'/dementia would I want my child to suffer with stress, exhaustion and sleep deprivation day in and day out? No. I would want him to find a high quality, local facility for me where he could come visit me as much as he pleased, as a refreshed LO with no resentments or problems that I have "created". For some problems there are just no satisfying solutions, only practical ones. May you have rest and peace in your heart no matter what you choose to do.

I think you basically have 2 options - get home help ASAP or place him somewhere. This is waaay too much for one person to handle.

Let me tell you something: my mother will be 94 soon and has moderate dementia along with more health & mental issues than Newsweek. She's been in the same Assisted Living residence since 2015, now in the Memory Care building which houses 23 residents. She gets MARVELOUS care over there, much much better than any care I could ever give her in my home. Just the incontinence issues alone would have me tearing my hair out, never mind staying up all night, repeating herself incessantly, asking what day & time it is in spite of the Alzheimer's clock I bought her, and on and ON AND ON. Someone comes in to wake her, change her soiled undergarment and bed linens, dress her, then wheel her into the activity room for the day, beginning with a huge hot breakfast. There she gets to mingle with others in the same situation she's in. They do crafts, watch movies, listen to entertainment, do puzzles, go out into the garden........and they STAY SAFE. They can't cook and burn the place down, they can't wander down the street & get run over, they can't play with bleach under the sink and asphyxiate themselves..........etc. There is a team of care givers to see to their every need 24/7. You, on the other hand, are ONE person trying to deal with a HUGE burden your father has put on your plate. Not intentionally, of course, but nevertheless.

I used to be a front desk receptionist in a Memory Care ALF before the plague hit. I can tell you the residents there wound up living longer than they would have had they stayed at home, where their loved ones were no longer capable of caring for them properly. Dementia reaches a point where that happens........it becomes humanly impossible to be the at home care giver. And it's okay. It doesn't make you a failure as a son, either, it just makes you a human being with limitations and a breaking point. And the common sense to KNOW that he's no longer safe living at home. Period.

Oh, you're likely to get comments from the martyrs around here who will remind you that he's 'your father' and you 'owe' him, and should lay down your life for his and yada yada. Just pass over those comments and keep your eye on the reality of the situation instead of the emotional guilt some love to heap on others.

The 'right' decision is the one that allows your dad to be safe and cared for in the best possible manner, where he will have someone available to help him 24/7. Even in the middle of the night when they won't be tired because they're used to working the night shift.

Look around at a few places and avoid the corporate owned facilities, that's my advice. Find a privately owned ALF and then speak to a few of the staff members to see how they like working there. Normally, I'd say to speak to a few residents, but that's not always possible in a Memory Care setting. Sometimes it is though..........you'd definitely be able to talk to my mother, she's great at small talk and chit chat, even with moderate dementia. Anyway, see how well cared for they appear to be and that kind of thing. Also look at online reviews, bearing in mind there will always be negative reviews for even THE best place on earth.

Wishing you the very best of luck avoiding guilt and placing dad where he'll get a high quality of care and where YOU can get on with your life and not die young.

It’s so hard trying to make the “right” decision. And then you second guess yourself. But it sounds like you are overwhelmed. When you can’t manage it anymore physically and emotionally and are at the end of your rope, it’s time to consider placement. You also sound as if you are concerned about his safety and it’s becoming more difficult to keep him safe. If you haven’t already done so, see an elder care attorney. Assess his financial situation to see what his options are. You can try 24 hour caregivers in the home, but then you are still part of the caregiving because you are present and aware and he will ask for you. And different people will be in the house. Call around to various facilities and talk to their administrators. Talk to his or your own doctor. Call the local area on aging. Explain your dad’s needs. Educate yourself on the Medicaid rules if needed. My mother is in an ALF with step up care. She has a private room and is surrounded by her own things. She has great care. Please don’t feel any guilt. You cannot keep going at this pace. You have done a wonderful and loving job so far and now it’s beyond your ability. Your own health will suffer and his safety is at risk. This will not be easy, but if something happens to you, then the situation will only get worse for him.

Start by hiring a little help to give you some relief. What job is the hardest for you? Showers? Early morning/breakfast? Bring someone in to ease your schedule. A little break and time off will help you immensely. Showers were uncomfortable for both of us, so for me, this was the answer.

Let your dad participate in the interviewing process so you hire someone who is a good personality match.

I hired someone to help daily with showers after a simple (and therapeutic) workout. A different person (a nurse studying to become an occupational therapist) would come in the evenings twice a week to play “brain” games.

Dad loved these interactions and visits and the breaks were a game changer for me.

You can only make decisions about moving your dad if you are well-rested enough to think the considerations through.

Sleep deprivation puts you at serious risk of getting sick or getting into an accident. You must be realistic about your ability to keep him in his home, which would have been difficult even before the pandemic. Start looking for memory care now with a goal for placement ASAP. His needs are only going to increase.

Look at his finances and place him in the best facility he can afford. Once placed, sell his home and use those funds to pay for his care. He will adjust - and so will you. You will feel better just being his daughter. He needs routine and the routine of memory care is far more structured than you can provide.

So sorry that you are going through this. It is so very difficult to watch a parent decline and lose cognitive function.

Dear "dalemitch720,"

You've been receiving a lot of good insight and suggestions from the others who have commented.

You mentioned wanting to make the right decision and are struggling. Of course you are. How can you make any decisions when your sleep is constantly interrupted? No one can be expected to think clearly without proper sleep. It wreaks havoc on your attitude as well as mental state. Please see that this is beyond what you can handle on your own. You have already tried to come up with ways to help him within his home but, it's not working no matter how much you wish it was.

My mom is at her second facility in their memory care unit. We had a wonderful placement agent who found a place in the midst of COVID when the majority of places weren't taking any new residents let alone my mom who had just been released from both the hospital and rehab facility due to severe dehydration and COVID plus a few other things. I can't tell you how thankful I am that my mom is in a wonderful place and getting a lot of great care. Is it perfect? No, because there is no such place even at home, it's still not perfect as you can see from how things are going. It's nothing against you but, you probably can't even begin to think of all the little things here and there that may be needed. Let the professionals take over from where you are now.

I pray for you to gain some clarity as to what is the best thing to do for the both of you!