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How do I deal with caregiver guilt?

My Dad has Alzheimer's and I have been the primary caregiver with the assistance of an aide who comes in to stay with him while I am at work for 2 1/2 years. I am preparing to move him on Saturday of this week to an Assisted Living Memory Care Facility in FL where my brother lives. How do I leave him there and how do I rid myself of the guilt? Guilt is ever present and the feelings I imagine a mother would have with leaving a child who cannot always speak for themselves. How do I do this? I feel like I am abandoning him but I know that he has progressed to a point where I can no longer care for him alone and work full time. He now gets angry with me when I try to assist him to the point of cursing me out or getting ready to hit me. Will he adjust and be okay? I worry that he will become more depressed and begin to decline.
Status: Open    May 23, 2015 - 12:40 AM

Caregiving, Dementia

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4 answers


Jun 04, 2015 - 10:53 AM

I applaud you for taking this important and difficult first step for YOU and your Dad. Having worked with seniors with dementia for many years you are right, it's like dropping off your child for the first time. What we often find with folks with dementia is that if the placement is right, the caregivers know how to work with folks with memory loss and the administration has good communication with you, the family, the transition goes smoothly after about 10 days. I encourage families not to visit with their loved one for at least the first week and 10 days if they can hold off really, it just makes the overall transition easier for both the senior and the caregivers. I would share with families that each day their loved one would take two-three steps, of ten, towards a smooth transition and each visit by a family member (especially if there was anger involved on the part of the senior) sets them back almost a whole day towards a smooth end.

When I was an administratror I invited families who needed to see their loved ones (for their own peace of mind) to use my office, which was glass enclosed) during activity hours where they could view their loved one interacting with others without interacting with them themselves.

If you feel like he is 'declining' talk to the nurse or administration about what they see with him when you aren't around. When he sees loved ones he may 'remember' he isn't living with them or at home and you may see some sadness that the caregivers or administration don't see during the day when he is active and interacting with others.

I am happy to answer any more questions if you face obstacles along the way that may help ease your mind. You are doing the right thing for BOTH of you and it just takes time for you both to adjust to a new situation. When you do visit him for the first time try and plan your visit around an activity that he enjoys and that will help with 'conversation'. He will also feed off your emotions...if you are sad he will feel something is 'wrong' and may mimic your feelings. If he senses you are confident and happy he will likely follow suit, again this will all come with time as you both adjust.

Oct 26, 2015 - 11:23 AM

I recently moved my mom into a memory care facility, and what followed was probably the hardest 6 weeks of my life. One BIG saving grace, however, was that throughout I was very clear that the place mom was living was really a great choice--they were patient and offered great guidance to both mom and me during the transition. They'd obviously done it a lot more than I had, so I deferred to them and now, 3 months later, all of us seem to have made the adjustment.

There were definnitely doubts about whether I was doing the right thing, but I had to keep coming back to what was really best for mom. Part of what's difficult, I think, is that at some point as a caregiver for one's parent, you have to go from trying to be a child that pleases and lives for praise to being the "adult" who makes tough choices. And that's hard for everyone.

I've also come to believe that it'll never be easy, and I shouldn't expect that at some point it'll be smooth sailing--even though I catch myself hoping that on a regular basis. Mom having Alzheimer's will always suck, and never a picnic for anyone. I'm happy to be proven wrong! But more likely, she'll never stop getting angry and upset and blaming me--I just hope that we can keep those times to a minimum and, meanwhile, have her be safe and relatively happy.

May 28, 2016 - 07:40 AM

We moved my Mom to a dementia unit of a skilled care facility just over a month ago. The first couple weeks she wanted to leave with me when I visited. Now she doesn't. She actually likes where she is! This has been a freeing decision for me. I feel like I have my life back. That is not selfish - it is true. It's OK to seperate a bit from your dad now and live your own life. Visit him a couple times a week. It is time for him to be in a place that can care for him as this dreadful disease progresses. You are making the best possible decision on his behalf that you can.

May 28, 2016 - 11:13 AM

My family moved my mom, who has dementia, into an assisted living facility at the end of last month, you even though it was against her will. She refuses or is just unable to realize her condition makes it unsafe and not economical for her to stay in her big house any longer. We did not realize while she was in her own home, just how dire her need was for moving since she faked her way out of uncomfortable situations brought about by her declining memory and did pretty well depending on her long term memory. The facility visited her in order to assess whether her starting a point should be assisted living or memory care. All of us, her children, were delighted that the assessment showed she'd probably do well in assisted living. We got her set up in a spacious "apartment" at the facility and felt good about all of the activities and socialization she would have. The food was very delicious with lots of choices. Unfortunately, within a week of her moving there, the staff required we pay to have outside help come in to give her extra attention 4 hours, then 8 hours, then 12 hours each day. Although she did well during all of the activities, afterward she would be completely confused and lost. She could not remember how to find her room or that the thing hanging around her neck was the room card key, she couldn't remember meeting the other residents, she couldn't navigate all the choices on the menu, she would wander to the part of the building for independent living and could have been a flight risk, and whenever there was a lull in the schedule she would become sad and angry, saying she had a house that was paid for and she was put in the facility against her will and needed an attorney to sue her kids. We came to the conclusion that we needed to move her to memory care, where there is more attention. I have visited her twice and she begs to go to her home and screams and yells. She even attacked me with her fists flying. This has been so hard on us all. Even so, a social worker from another facility I toured said something that really helped me. She reminded me that dementia patients live "in the moment." They can have joyous moments and sad or scared or angry moments, but nothing is retained in their memory since the short-term memory is so impaired. We family members get disappointed that our loved one can 't retain the memory of a fun, quality moment we spend with them or an activity they enjoyed. Even so, just as they forget those good times, so also do they forget their sad moments, frustration, fear, anger, etc. We worry that they are miserable (because that's all they display when we talk to them on the phone or go for a visit), but they have high points in their day as well that either they don't remember or don't choose to tell us. Knowing that has helped me with all the guilt I feel. I know this is the most loving thing I can do for my mom, even if she doesn't perceive it as such. Hopefully, you can have a good communication with the facility staff and they can let you know of the moments when your mom smiled, was creative and had a sense of accomplishment over something she did well.
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By jmae159 on Aug 13, 2016 - 07:23 AM | Like (0)  |  Report

We placed my mom, she is 87 now, in an assisted living facility 2 1/2 years ago. She did not get involved as I had hoped. Six months later she had a fall that required we place her in rehab so after that we moved her to a skilled care facility knowing it would be long term. We looked at some memory care facilities but were not comfortable with the set up nor could we afford to place her there. Her dementia has continually gotten worse. In fact, on April 2, 2016, it seems like a switch just shut off in her brain and the confusion has been worse ever since. Yes, we have dealt with 'uti's' but the antibiotics never resulted in her confusion clearing up like it had before. I am continually trying to handle conversations with her asking about moving her somewhere else. She complains of the food ( I know some of it is not very good but the things I have eaten she complained of tasted quite good). She is always asking about a doctor that she says worked on her shoulders and wanting to know what he is going to do. There is no doctor that has worked on her shoulders, there have been no phone calls from doctors (I double check the caller ID to be sure of phone calls). I explain her shoulders are down to bone on bone and the arthritis is what makes them hurt and surgery is not an option. I can be evasive when it comes to questions about my dad, who passed away in 2003, and she insists she has seen or talked to him. I have notes posted for her to read to remind her that there are pictures on the wall to tell her this is where she lives, she says they follow her around to all the other places she has been (she has never physically left the facility). I just cannot figure out how to deal with the constant questions about a doctor that does not exist.

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