Overwhelmed, confused, scared and burnt out. Advice?

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.

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.

Dalemitch720 - I’m sorry this is happening; I know it’s so hard. My thinking would be to try the least restrictive option first. That is, contact a home care agency and have aids come in to assist you. That may be all that is needed (at least for now). You can always move him into a facility in the future if the aid service does not work out. But if you go with a facility first, it might be harder to ‘undo’ if you change your mind and decide to bring him back home. Plus there might be significant costs incurred. Best of luck to you.

Dalemitch
perhaps it’s time for respite. This would give you a much needed break and might help to get him on a better sleep cycle. Even if it doesn’t help him it will help you and he needs you in the best shape possible. You have to think for the both of you. I have a cousin who is as close to being that saint that Alva talks about as one can get and even she sends her mom (with advanced Parkinson’s and dementia) to respite. Call your Area Agency on Aging and ask for the services that are available to you and your dad.

Also google Parkinson’s support for your Area and you will find many resources with folks who are dealing with PD. Make it a priority to attend some meetings to find out what has worked for others in your community. Cousin frequently invited me to join her at conferences where she learned new therapies and gained support. They had care for the PD patients so she could take her mom along. She researched and sought out the services that the counties around her had to offer and took advantage of them. I could go on but this wonderful cousin isn’t trying to earn a living at the same time. You are.

You have been dealing with it long enough to know the current program isn’t sustainable for either of you. Your dad is in much better shape than my aunt as he is in the kitchen and on the phone. The disease progresses at different rates for different people. But it progresses.

https://www.agingcare.com/local/area-agency-on-aging

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.

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.

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.

It is all normal for him to forget, or not know to push the help button. My 90 year old Grandma I am her caregiver. Melatonin helps her going to sleeping at night. Just a few months ago I found a motion sensor device on Alzheimerstore.com it came with a wireless pager that I keep with me to alert me when she's wondering around. Other times I fine the night getting stressful she not sleeping at night more nervous, confused, and nauseas, I will advice her Dr. Thing are different and the changes. Dr test and it has been a UTI infection that make everything fall.

Confusion of time does happen in dementia and it usually means that it is time to expand the care support network. Since dad is up at night, he - and you - need to consider having somebody else there who can be "the night nurse". Ask family, friends, community of faith, and hired home health aide to be there for at least 8 hours during the night, every night. They should be able to help dad to the bathroom, redirect him back to bed, and make light snack if he insists on eating. It might also be a good idea to talk to his health care provider about a sleeping medication to help him go to sleep and stay asleep during the night. Until you can talk to his doctor, make sure that dad is not sleeping too much during the day. Check with dad's health insurance to see if home health aide is covered or if it will need to be an out of pocket expense.

I agree with everyone who says YOU need some respite and good rest before making a decision. You don’t want to jump and then regret it. Respite care is great if it’s available; you could “try” a group home for a month, if possible; evening care givers would you can sleep uninterrupted. There comes a point when you must put yourself first in order to take care of them. I am nearly 8 years with mom (Post stroke/dementia@91) and dad (Slowing and showing a dementia signs @ 93). Had to make some really hard decisions in the past year regarding their care could not have done it without being rested and clear. Caregivers are amazing support and finding the right one is key. Do your research!! It will pay off. Start by making a list if your so over whelmed. Prioritize, putting you first to make clear decisions. Hopefully the finances are not an issue. That would create a whole set of other issues. Good luck and you can do this.

I'm struggling with the same decision.
One thing that has made the situation a little easier is the baby monitor that I purchased. Vtech has one that comes with 3 pieces. One in your fathers room (the main monitor), a second in your room to be able to hear him. If the kitchen and your fathers room are in close proximity to each other, then maybe the main monitor can go in between to be able to hear his movement. Our home is 2 stories so the third piece is on the main floor. The receivers can be taken off the cord to carry which has made it easier as well. I sometimes put the main monitor in the living room when he's up so that I can take care of things outside and still hear him. I also put a third lock on the door that my father can't reach or open, this gives me a little piece of mind that he won't leave during the night.
I've been caring for my dad for 6 years - he's 91 and he has dementia. It has started getting to a point that I can't always handle the behavior and the problems that come with it. I have hired a companion a few mornings a week so that I can run errands or just relax somewhere. It has been decided that we might start having night care 2 -3 times a week. the hard thing there is I never know when it will be a bad night, I hate to waste it on a good night. Right now the memory care homes are not letting visitors come in to check out the place or to visit because of the virus - so that is no longer an option for us.
good luck I hope the suggestions you get on this site help.

I would say it is definitely time to put him into a home.

It is too dangerous for him to be on his own and you are getting burned out which is very bad for your mental and physical health.

My Papa also has Parkinson’s and the dementia that accompanies it. As he went downhill at home, and fought residential care, his doctor insisted it was the only place he could get the medicine he needed at the right times he needed to take them. That is sooo very important with Parkinson’s. Placement also allowed him to have medicines he needed at higher doses than he could take at home. So that’s something else to consider.

His Parkinson’s will continue to get worse, as will his dementia. If you think you are at the end of your rope now, what about three months from now? six months? It will be better to place him now while he can still get used to his surroundings and the staff. Then you can be the ever watchful daughter who visits and keeps and eye on things :)

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.

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!

My mom was diagnosed with Alzheimer's in 1999, and I moved her in with me. I had a full time job, and two young kids. No help from other family members at all. Yes I hired caregivers to help but it is very, very, hard to find honest and trustworthy caregivers. My mom had my master bedroom, and I slept on the couch, just in case she tried to get out. She would come out to the living room during the middle of the night and scream " I'm hungry" then she started to say in the daytime, that I forgot to feed her. I made up all kinds of different foods and put small portions in freezer so it was easier to microwave instead of cooking all the time. Also so they don't get up, put a t.v tray by them with water, snack foods, sandwich, lunchables, fiber bars or cookies, crackers even jello. You have to give them choices. One day they might say they hate something you made or left out for them, then the next day love it. There days and nights do become confused. They also will go back and remember things about their childhood, and ask you questions you can't answer. The one thing that helped me keep my job and sanity was "Adult Day Care". I took my mom to one that delt with Alzheimer's. They are costly, I received some help with pay through senior care programs and adult protective services. The day care programs can also tell you what programs they accept payment from and their phone numbers. The day care programs are tremendously helpful in a lot of ways. They have different activities and the ones they like, they can do at home. I used to have them keep my mom up all day with maybe a nap in the morning, that way she would be tired and sleep through the night. I don't know what it is but all of them remember music that they loved. My mom could remember every country music song she had Albums of, I even got her a karaoke music box. Oh that kept her busy, plus she is now rated in the top 10 of country music singers. Their memory changes day to day. She started to call me my nieces name, some times she could remember that she ate, then that night she couldn't remember when she ate, she swore my cloths and sandals were hers, with my shoe size being a 7 and hers being an 8, my clothes are size 7 hers a 9 or 10. She would have them on in the morning before I got up. It wasn't funny then but I can laugh at it now because I remember what she looked like. She told day care she wanted her nipples pierced. She also told them she liked beer and that I had a keg of Coors at my house. She never drank in her life, nor cursed but now she was. I guess she even forgot how religious she was. So if trying to keep your dad at home and not going insane or getting depressed, I suggest for you to look into Adult Day Care as they can help in many ways. They might even have a caregivers list that has already done a background check, and has a copy of their driving record. Hospitals usually have one, senior programs or services may have one also. One of them should be able to help you. I also used "meals on wheels" to help on days I worked. Games like Checkers or Cards are good for them, even some exercising. I had caregivers do with my mom. In Home Health Services can help you pay for caregivers depending on what their income is. I hope this has helped. Iam now retired and do caregiving to help others who need a break or help. I donate 5 to 10 hours a week. Keep me updated on how your dad is doing. Good Luck.

Imho, you need respite before you fall faint and ill and are good to no one. Seek help through a church, Visiting Nurses, et al.

Girl, your father has dementia, Parkinson's, and his actions are having a horrible effect on you and he is in danger. You have three choices - keep him and care for him and heaven help you because your life will be hell. Or you can get a full time caretaker so you are relieved and can live your life. Or you immediately place him. I personally have to draw the line for various reasons when mentality and behavior cause problems and impact my life. I cannot and would not put up with it. I hope you make the right choice. This is NOT your cross to bear any longer.

You have gotten a lot of advice to look into placing him in a facility and that may ultimately be the best option but in the mean time there are things you can do to alleviate your fears about keeping him safe.
Place a motion alarm or floor mat alarm at the entrance to his bedroom so you know when he is up and about. A baby alarm might be a good option, especially something with features like two way speakers or a camera.
If you are having problems with the stove then remove the nobs.
Inexpensive door alarms will alert you when he tries to go out, placing a simple night latch high on the door can often avert or at least slow down attempts to leave too.
Do speak to his doctor about what is happening, tweaking his medications may help, and be sure to emphasize that when he doesn't sleep you don't either.

Im sorry. You have the weight of the world on your shoulders. Change is hard and unstoppable. It is frustrating and scary to see your dad and your relationship with him change.

Many writers tell you a facility is the only choice they would make.

I cared for my parents at home - for me, this was the right choice. I simply could not have done it, though, without help. If you are unclear how to proceed, start by getting a little help at home so that you can regroup, sleep, refocus and get some relief. Even a solid weekend off would be life-changing.

Once you make the decision that’s best for your situation, don’t look back. Whether you choose to care for your dad physically in your home or nearby you have been there for him all along.