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I have been caring for my dad, who moved into an Assisted Living Facility but has had so many issues where I had to step in and be there, and I had be there for so much. He has changed Assisted Living Facilities because his condition was not doing well and he needed more support, and I feel he may end up in a skilled nursing facility. But I am still needing to go see him all the time, even when I put boundaries up. I got to the point where I was so depressed and angry that I can't even be around him. I took a few days, but now I don't know that I can go back and see him, because I feel like he will start to stress me out again. I have spent hours in the hospital with him, taken off work, spent hours with him going to appointments, helping him, staying up late, etc. I just can't do it anymore. He is falling a lot and won't stop making things difficult. I feel guilty but I am not taking care of myself and I hate who I see in the mirror.

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It's not your fault to feel this way. You have been very supportive and taken on a tremendous load and it's natural and expected to want your life back. Every person in this forum has felt this way at some point. It's hard to see that in ourselves but please resist beating yourself up. The burnout articles I've read continues to help me put this chapter of my life in perspective. I wish I had a magic wand to relieve your stress. Hugs to you
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I'll never understand why so many people choose to play nursemaid to an elder in AL.

He's in Assisted Living, let the staff assist him with his living, if it's too much for them, off to a Nursing Home he goes. That's just how it works.
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Beatty avatar
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Beatty May 2022
"I am not your nursemaid"

A worthy statement! Perfect for the AgingCare teatowel & t-shirt range 😁
(3)
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I think the main thing to blame here is the dreaded Parkinson's Disease. It came for your Dad. It is progressive. It causes not just the shuffle walk but effects the brain in many various ways - speech, sleep, especially coordination & balance. It causes falls. Used to be called 'The Falling Disease'.. (or maybe that was epilepsy?).
Only 68 😥.

Feelings of anger, resentment are normal. Having to steer & manage his life as well as your own.. this is the burden of care. Can drown you.

Take him somewhere safe & enlist trusted folk to care for him. Whether this be ER, Assisted Living, MC or Skilled Nursing Care. Then you step back. Not completely let go - but enough so you let those caring for him do their job.

I understand the hover at the hospital stage. When occassional that's fine. When it is every 2nd week, it's just too much.

Also remember someone's first fall or ER trip is a big deal. Family rush & hover. Everyone has fear of the unknown.

Ater multi falls, everyone has experience. They know the drill. The ER has past medical records on file, the patient knows what to expect. Family know hovering won't change a scan result etc. May as well get their rest.

Don't be too hard on yourself.

It's a process. This letting go, gradually. I think it is meant to be like that. Stepping back from Dad's hands-on care, sideways to being a family member, then forward in your own life.
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venting,

You're absolutely right. People don't think such things as 'attention falls' and 'fabricated health crises' are real with the elderly, but they are. Their reasons for these actions are also real. Such reasons as:

-Plain old spite. I had a care client who would crap and piss herself (she still used a bathroom) whenever I was with her which was a four-hour block of time. I came to work and her daughter was by. The daughter was there for over three hours. The second the car door closed, my client crapped and pissed herself. Rather than get up and go to the bathroom which she did and was able to do, she did it in her chair for me. I quit that position even though the money was good.

-Sabotage. The elder wants to ruin something their caregiver or family member has planned. Especially if they aren't part of it.

-Attention. A person is lonely or feels like people aren't paying enough attention to them. So they 'invent' and emergency. A staged fall or some fabricated health crisis. The same way that a child with a 'boo-boo' that isn't serious. Or a mysterious tummy ache that goes away when prescribed a cup of hot cocoa or dish of their favorite ice cream.

-Boredom. An elderly person who has nothing to do all day and many times is alone, gets bored. They create a drama that they can star in like a staged fall. Or something requiring a family member or caregiver sit down in the ER with them for hours at a time. I remember a couple years back I was taking a 4-day weekend out of town for a wedding. My mother started having chest pains and light-headedness when I was bringing my luggage to the car. Literally on my way out. Totally fine up until then. So I told her I'd call my sister which I did. It was fabricated. She wanted to ruin my four days away and prevent me from going to the wedding which I'd been looking forward to for a year but wasn't able to. She didn't want my sister to co-star in her drama because she was "working" and didn't want to bother her while she was at work. I called her anyway.

So venting, you are spot on about the staged falls and planned health dramas. Spot on, my friend.
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venting Apr 2022
Agree very much. The examples I personally have seen in some families, are (1) Plain old spite. (2) Attention. (3) Sabotage (it seemed like a coincidence) (but every time there's a celebration, some huge problem was created; not necessarily a health issue; something that ruined the celebration; something so not everyone could relax and be happy).

"She didn't want my sister to co-star in her drama because she was "working" and didn't want to bother her"

Absolutely see what you're writing. Terrible that your mother wanted trouble only for you. And I like the words "co-star in her drama".
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do you think your dad is doing this on purpose i think falling is something that isn't done on purpose.
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venting Apr 2022
I've met various elderly people. Some examples: (1) elderly people who, really intentionally, fall/take risks, consciously, on purpose, because they know their adult child will clean up the mess/emergency, and they get some joy out of creating stress for their adult child. (2) elderly people who don't intentionally fall, but who intentionally take risks, for example, by consciously refusing to use safety measures (walker, grab bars...). Why? Sometimes because they just don't care anymore.
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You need to get some help if you can not look for alternatives. Your brain will allow you to neglect and abuse him. Your mental health....take care of yourself.
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I feel so sorry for you. You are probably so burnt out that it will take months or years to get rid of the stress. I'm so sorry.

I think you need to find Memory Care or Assisted Living that you feel comfortable with that will take care of him, no matter what happens. One of the criteria for placement would be ensuring that you could talk to someone about his care, without actually seeing him or he knowing that you are monitoring his care. At least where I am, not all Assisted Living Centers can take care of a person at every stage until they die. Then once he is placed there, you will need to school yourself to not worry about him and allow the professionals to do their job and keep tabs by talking to the nurses.

I have found that when I voluntarily choose to visit my Mom, I have a lot more patience with her, her aches, her complaints, her oddities, and all the negatives of living in a group setting of seniors. Her life is not doing as well as when I was taking care of her, however, my health (and attitude) has greatly improved.

I'm probably a lot nicer to be around too!

You can do this.....
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Kmi7688: I feel for you as your father is only 68 years of age and is already in an Assisted Living facility. This is quite young. Prayers and hugs sent.
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Warm encouragement from me. It’s tough. I hope it all improves for you soon!
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One more point. My Mom was in an AL and then LTC. I never received a call unless it was considered an emergency. Of course, she adapted to both easily and was easy care. If she was not though, I would not have let calls for every little thing go on. My Mom was where she was so I did not have to worry about every little thing.

The first 4 months my Mom was in an AL she fell. Each time they sent her to the ER and told me afterwards. The 4th time was the last time. I had a talk with the RN. Each time Mom fell she had no broken bones. Nor, did she hit her head. The reasoning in sending her was she complained about pain. Wouldn't you be in some pain if you fell, I said. Pain for a Dementia patient is taken out of proportion. A child will scrape a knee and scream like they are dying, an adult not so much but a Dementia patient is like that child. I then said no more ER visits unless she hits her head. If she continues to complain about pain then call me and then I will decide. That decision would be made after my RN daughter looked Mom over. (So nice to have an RN in the family)
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I too would like to know what these "issues" are? Is it your Dad or the AL? If the AL I would tell them to handle it that is why he is there. You only want them to call in an emergency.

If Dad, boundries have to be set. Lets say he is capable of understanding that getting up from his wheelchair he may fall, then he has to stop getting out of his wheelchair without help. This is pure stubbornness on his part. I am not beyond a little threat. "Dad, if you keep doing these things knowing you aren't capable, the next step is a Nursing Home because ALs have a limit to how much they can help".

To me, telephones are a privilege but I hear some States consider it a right. If my Mom was constantly call me all day long in an AL and talking to her about it didn't stop, the phone would be taken away. No one called me at work unless it was an emergency. So if Dad is calling constantly, you need to be blunt and firm, no calls. If it is something an aide can help him with then call her. If its something he can do for himself then he needs to do it. Do not disable him.

I would talk to the nurse in charge and ask her if Dad is beyond what an AL can do for him. But ... you must set boundries for you. If u can't visit everyday and only weekends tell him that. And stand by it. He is in an AL for the socialization to. If "issues" are of his making, pick and choose which ones you feel should be brought up to management. Things are never perfect. The AL has a routine that he needs to except and you do not need to run to his aid for every issue.
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Unless you have a magic wand tucked away somewhere, there is very little good that your being so constantly there will do for your Dad. It is likely it is only promoting more anxiety and stress for HIM as well as for you, and this is why upon intake to Memory Care it is often recommended that family stay away for at least two weeks and often longer. You Dad is failing now and Assisted Living is the wrong choice. Often without a diagnosis that requires skilled nursing a SNF isn't used, but Dad likely does need memory care. If he cannot afford a facility, and I don't know how many can for any amount of time, a nursing home may be the only answer.
Your ruining your own health and your own family isn't the answer. But it takes long and long to realize that grief is what you experience, along with your elder, rather than guilt. Often a few visits to a counselor (esp. if a licensed Social Worker trained in counseling on life transitions) can help you sort through feelings.
There is honestly no way to get through all of this without grief and distress. But you do have to provide understanding and rationale in the equation; my advice is to get some help for YOU, because you are grieving, have anticipatory grief and have alarming levels of stress just waiting for the next bout of anxiety to hit. Get elp for you. I am so sorry you are going through this, and your poor Dad as well.
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Your dad is pretty young, if the 68 is correct.
Parkinson's and the possible dementia that can go hand in hand is a lot.
It is possible that Memory Care might be a better option for him, if there is a diagnosis of dementia as well.
Skilled Nursing would be your next option.
Is your dad a Veteran? If so the VA may provide some help and it is possible that he may qualify for a little or a LOT of help.
If he is a Veteran contact your local Veterans Assistance Commission they can help determine what benefits he would qualify for.
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i'm not sure what you mean when you say he has so many issues where you need to step in. What exactly do you need to do that the facility can't do or can't be done on the phone. Does your dad have POA-finances and health; who pays his bills; what type of financial resources does he have; do you have siblings: if married, does spouse help you? I would see elder care attorney and/or contact your local aging agency for assistance/guidance. It sounds like you say you aren't going to do some things for him and then do them. The message to your dad is that you will do what he wants anyway. That enables him and as long as that happens he will not change. There are some basic things that you probably need to do -see him in hospital, periodic visits, etc., but other than that no should mean no -you may so no but he sees yes!! I think seeing a counselor might be very good for you to help deal with your feelings and work out positive way s to address them
.
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Oh gosh, when I read your statement "I got to the point where I was so depressed and angry that I can't even be around him" a thousand bells went ringing in my ears! I feel for you being caught up in this situation. I care for my mom and I share your feelings of resentment for being put in this position. Like others have posted, you are the important one here so do what you need for yourself. I find that when such feelings come to the surface it helps me to go through the motions of being uninvolved, for a while. It felt foreign at first but soon I realized that things were being taken care of and I didn't have to be involved in every single task or decision. At the end of the day it made no difference to mom yet it brought such relief to me.
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It appears that your dad NEEDS skilled nursing care. Currently, you are providing that care. Help yourself and him by helping him to transition to a skilled nursing facility so your visits can be about socializing and not hands-on care.
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Many people have been and currently are in the same situation as you. I've been there too. You are not alone in this.
When my father was placed in the nursing home I had them on my back seven days a week. They never stopped. My full-time job at the time was as a caregiver to a bedbound invalid with LBD. I was also doing for my elderly mother who is not an easy person on her best day.
It got to the point where I truly thought I was having (or had a nervous breakdown) so I stopped. There were full days during the week where I would not take a call from the nursing home. My sister would handle the calls. I would not speak to my mother. It wasn't personal and she respected it. Some days the other caregivers who were additional coverage had to cover for me because I just couldn't do it. They did.
You have to take a break. Full days where you take no phone calls concerning your father. Not even calls from him. No visiting. No running errands for him.
It sounds to me like AL isn't going to be the right place for him if he's falling. LTC will probably be soon.
Please, for your own sake take a week or more off from seeing him or taking calls. Tell the AL to only call if there's a real emergency. Then start taking weekends off. No dealing with any care business your father. No taking calls from him or them, and no visits.
Then come on the forum here and let everyone know what's going on with you. This is a good group and very helpful. I wish I knew about this forum when my father was still living. Good luck and keep us posted.
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I don't know what your relational history is with him, but aging and declining is what is making his and your situation difficult. You write as if he's doing it purposefully (and I understand that this has been the dynamic in some families). Try to look at the decline/dementia/memory impairment as what is making things difficult, not your dad personally, and maybe this will help deflect the resentment so you'll have a "common enemy" to battle together from the same side. But yes, you must make taking care of yourself a priority and come to peace with the fact that you can only do so much for him. It is ok to grieve this situation, but do not feel guilty -- you've been doing yeoman's work to this point.

Does your dad have the funds to be able to hire a Geriatric Manager? If so, I would consider this option to help the both of you. And I agree with others who point out that maybe he is getting to the stage where AL is not enough of the right kind of care. Falling happens even in at-home care with many eyes on the elder (been there, done that). May you gain wisdom for solutions and peace in your heart!
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Ditch the guilt and seek counseling to help you deal with your father and his declining health. You are doing as much as you can. There should be no guilt. If you have to spend a lot of time overseeing his care, perhaps he does need to be in skilled nursing. Talk to his case worker at the facility and his doctor. Do you have siblings who can help? Or do you have to do it alone? Can he afford to hire aides to be with him in the hospital and to take hime to doctor appointments? You may have to talk with him to let him know that his care is too much for you to handle. Good luck to you!
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I'm almost at that stage with my mom. I love her and I don't want the caregiving to end with her dying, but caregiving has destroyed my life and my disdain for helping her with any and all things 24/7 is stronger than my love for her. She won't get extra help and is hardly out of bed doing something more than once a week. She wants to be mobile again, but she lacks the motivation and doesn't hate it enough to get moving. She's 70, but regarding physical activity/ability, she might as well be 90.

Many think she's taking advantage of me and one person I talked to thinks she's content where she is and will squeeze every little bit out of me until some major change happens, whether it be me standing up for myself or one of us dying.

I just wish I could get away from her for a bit and come back fully rested and recharged. However, she'll likely text me and call me regularly while I'm away.
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I wonder if AL is the right place for him? Sounds like he's in pretty rough shape and there is only so much most ALF are willing and able to do.

I can totally understand how hard it is to be around him. I guess you could stop doing extra at AL so that he will have to move to a SNF where he will not need so much outside help and then maybe you will be asked to less, your burn out will heal and maybe you'll be able to be around your dad again. On your terms.
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Hi! You wrote, "I have spent hours in the hospital with him, taken off work, spent hours with him going to appointments, helping him, staying up late, etc. I just can't do it anymore. He is falling a lot and won't stop making things difficult. I feel guilty but I am not taking care of myself and I hate who I see in the mirror."

You sound just like me (with a few differences, like my Dad makes great effort to stay safe, healthy and prevent emergencies). He loves life! In fact, he's such a smiley, wonderful man.

You wrote, "but has had so many issues where I had to step in and be there". Same here. My plan is to help with one more emergency (something came up today, a small emergency), and then really take care of my life. I hope the staff in your father's AL can do a great job, without you being there. My Dad's aides at home can handle the issues. It's a testament to our love, that we care. But we must love our life too.

I like what BarBrooklyn wrote to me, "Jeopardizing your career and mental health are no way to honor your father."
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