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I already know he wants to come home but am unable to care for him. Was this aide out of line? I already feel guilty to have to place him.

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It is not the aid's decision.  Tell him/her you appreciate his concern but are not able to care for LO
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psuskind1 Sep 2020
This is my reply to all of your intelligent and informed responses

I did send my text to the administrator in charge and she was extremely receptive to my input. She assured me this issue would be addressed.

thank you all again for hearing me.

very best to all
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I’d find out the aide’s motive in telling you this. There could be many reasons and I’d want to know what they were. Would it mean one less person to care for? Was it a warning that the care there isn’t what it should be? Try to find out why he/she said this, and the you’ll know if you need to seek help and clarification higher up
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psuskind1 Sep 2020
I believe she said it because like many residents they’re fixated on”going home”and my LO is to a great extent. My doctors told me that I kept him home longer than I should have.
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I can't know exactly how the aid said this. For instance, saying "Your poor Dad just keeps saying 'I want to go home'" is a good deal different than saying "You should take your father home; it is all he wants".
I think I would write down the exact conversation, attitude so far as you could tell, and quote, and would discuss it with the administrator. You describe it here PERFECTLY, you KNOW he wants to go home, and you already feel terrible about the limitations you have, and his grief, and your OWN grief. And now you feel even worse.
Again, there is often a language barrier, or something that makes things not right in translation. It is hard for me to imagine someone saying this out of malice, but there are people I guess who have malice. In any case, if you are fairly certain that this was said in a way to criticize the fact your father is in their care, then I think that the administrator needs to have a gentle talk with this person. And if there is a history of this sort of thing, she may be in the wrong job.
Hope you will update us. Try to be as certain in your own mind as you are able before talking to anyone. Good luck.
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psuskind1 Sep 2020
I called to talk to him and this aide said and I quote... you can’t talk because he’s sleeping.. I said that’s good. Then I said well tell him I called and again... I quote ..she said I can’t do that it would just upset him because he just wants to go home...why don’t you take him home..
I simply said I’m unable to keep him safe at home....ended conversation. But then I got to thinking about how out of line this person was. I drafted a text to the administrator but after thinking about it a. I didn’t want to get her fired and b. If she wasn’t fired she might say/do something hurtful to this dementia resident.
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Is the aide upset at or by something your loved one did?
Was this said in anger or frustration?
In any case the aide should not have even said this with your loved one present. It might put hope where there is none.
If you can recall the exact conversation and the context the way it was said this might be something that you should bring up to the administration.
In any case an aide, or any other employee should not have any say in how or why you have placed your loved one in Memory Care.
You have nothing to feel guilty about. you are taking care of someone the best that you can. The fact that YOU personally are not doing the day to day care is not important. Often the decision to keep one home is the easy decision, to place someone in a facility when it becomes more that you can personally manage is a much more difficult decision.
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psuskind1 Sep 2020
It sounded more like frustration. My LO was not present...I was told he was sleeping.
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We all like to think that professionals, particularly those in the medical field, engage their brains before they open their mouths. Unfortunately, that's not always the case...

My dad died when I was 15. He had a non-malignant brain tumor that started to bleed. It started when he was home - he complained about having a headache, and went to lie down for a little while. When my mom tried to wake him, she couldn't. He was in a coma. He was transported to the hospital. Once there, one of the internists in the hospital (not my dad's neurologist) upon examining my father asked my mother "What did you do to him!?" She dealt with that guilt for a long, long time even though my dad's neurologist assured her that there would have been nothing anyone could have done to save him.

What that aide said to you was totally reprehensible! Unprofessional doesn't even begin to describe it! I'm sure your LO is not the first person in this facility who wants to go home, and I'm sure he won't be the last.

If I were you, if this aide makes a comment like that again, tell her that. Ask her "Why, is my dad the first person here that you've cared for who wants to go home? Maybe if you can't handle comments like that YOU should find a different line of work."

You don't owe this woman any explanation as to your decision to place you LO, which I'm sure was one of the more difficult decisions you have ever had to make! It's your responsibility to make sure he's safe and cared for, and you have done so. You are grieving, which is understandable, but rest assured you have done nothing about which to feel guilty.

(((hugs)))
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Yes, the aide was out of line. She does not know all the circumstances that went into making your decision, and she should not comment without your asking for her input. He may want to come home, but the truth is the aide is not helping the situation one bit by chiming in. Instead, the aide is making it even more difficult.

Be kind and reasonable, but also remember that if the aide is saying this to you, one must wonder what is being said to others! Please do report her comment - either so the aide is reprimanded or let go - neither of which would be your fault.
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Very out of line, yes. I'd at least inform the higher ups about the comment.
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The aide is hired to care for her clients and not to give her opinion. Please address this with management and give them name of aide, day and time conversation occurred. If the aide does this to you, he/she probably does this to other family members.
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Yes send your email to the Administrator.

It sounds like the Aide needs some more education. It is in the Aide's best interest to get feedback so they can increase their knowledge of their resident's needs & what their role is.

They may need additional training on Dementia too. The Aide may be a good worker (but maybe inexperienced). Hopefull the Aide will accept positive criticism & take steps to further their skills.
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My goodness............care giving 101 = knowing that a dementia resident is CONSTANTLY going to be talking about 'going home', which can mean a wide variety of things, and should be handled professionally, not by calling the offspring to advise taking them home!!! The ED/administrator DEFINITELY needs to know about this situation so the CG can be trained properly to deal with his/her charges moving forward. They need to at least watch some Teepa Snow videos and take some online courses which most ALFs provide to their employees as a REQUIREMENT for working there. Basic training in dementia is a necessity if a resident is to get the proper treatment. Express YOUR frustration and displeasure of the handling of this situation; it was extremely unprofessional and you should NEVER have received such a call.

Best of luck!
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They ALL want to go home.

We had problems with the aides saying "You're right, you don't need memory care." They were just doing it so he would calm down and cooperate with whatever task they were trying to do.

It's just a matter of education. The administrator should have the aide attend (or re-attend) some workshops on dementia and better ways to interact with the patients.

Tell the administrator. The aide just needs better information. If he or she really thinks every elder belongs at home, maybe a job as a home care aide would be more appropriate for them.
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babziellia Sep 2020
Yes, I'm wondering what the aide is saying to your dad. Is the aide encouraging your dad's thought process? That's only hurtful to him and to you. Possible triangulation. Not good.
Either this aide needs more training or needs a different line of work.
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Definitely contact the administrator. The aide is in search of a new career and doesn't realize it.
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I am glad to hear that you sent an email to the administrator about the situation and that she said the issue would be addressed.

Sometimes inexperienced (or young) health care workers become too emotionally involved in their residents' lives and they don't think about the consequences of their comments or their actions.

Please do not feel guilty that you had to place your LO in a facility. You did what was/is best for him. {{{HUGS}}}
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Wow...an aide should not have an opinion. As a retired clinical healthcare nutrition employee most dementia patients ask to go home. An aid has no place telling family what to do or what is the best care..My mom told me before this dementia got so bad that I should ignore her requests. Mom knew her judgement would be altered. She trusted I would keep her safe. Yes...talk to the administrator..Asap! Staff should be using techniques to distract patients from these thoughts of going home.. not going to family..That is so upsetting. My mom packed her stuff for weeks. It was so rough to hear. Her staff helped me find the right words to settle her down. Mom now says she is safe and content. Good luck! God Bless
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If you've been on this site for longer than a month you probably know that the "home" he referred to may not even be the one he spent the last 50 years in, but the one he grew up in. A lot of us have heard our parents ask to go home while they were home. Someone working in memory care really should understand that, and understand that memory care is what you do when you can't keep your eyes on them and explain that they are home constantly and keep them safe.
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TOTALLY out of line! Could you tell the admin without naming names?
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Please don't do anything until you talk to the facility administrator and your LO's doctor. Why is the aide telling you this? What makes them think this is the right thing to do? Many of the comments below are what I experienced with my mother who is in memory care. "Home" represents a time when she was independent and living a good life. But in time, people do adjust to being in memory care. Remember that dementia can get worse over time and then people need even more care. My mother has to be fed, she doesn't talk, she can no longer walk and has to be moved from her bed to a wheel chair by an aide (she is petite now, so one person can handle this). A larger person might need special equipment to lift them out of bed. I'm saying this so that you can think about whether you can handle this at your home, even if you had an aide to come in and help.
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Nearly all seniors in facilities "want to go home." But this does NOT mean that they "should" go home. When a senior needs to be placed into a facility, it means that the level of care has become too high for them to be placed safely at home.

You said it all when you stated "I am unable to care for him." This validates that your decision to place your LO was the correct one.

BTW, aides have no authority or expertise to recommend that any resident be sent home - so that comment was inappropriate. You might want to speak first with the supervising nurse about your LO's current health status. Then speak with the administrator of the facility.
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dragonflower said it all. Who wouldn't want to go home?? Doesn't mean the safety net exists to live at home.

I can't help but wonder if the aid was trying to give you a hint about the care he receives at this particular facility??? Maybe it's not so great. Can you get in to visit and observe? If he has a private room, see about installing a camera where you can 'drop in' to see what's going on.
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First, I would ask the aide 'Why do you say he should go home?' (Is your father near end of life? Is it a bad environment for him? Is he too difficult?) I would also inquire to Administrator with same question.
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If you research dementia/alzheimers you will find that when a loved one is anywhere and they say "they want to go home" it usually means they are worried. The idea of home represents safety in their mind. When I moved my mom (2 times) she would say that she wanted to go home. This went on for a few months and I would always ask her "where did you live?", "what did you like about your home?", "tell me about what your yard looked like". I was surprised that my mom who had just left her house that she lived in for over 50 years answered all of my questions with information about her childhood home. She really didn't remember her house in the short time leaving. I believe her going back to her childhood home was a source of comfort for her and talking about it made her calm down a lot. It is not instant, but just constant reassurance that they are safe will help. Ultimately they need to be where they are the safest and being well taken care of. That being said, I am a firm believer in cameras at facilities based on past experience. It your loved one has dementia, your only source of information about their care has to be from you.
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Dosmo13 Sep 2020
Very helpful advice to anyone who has family in memory care. Easy for an elder, unsure of her surroundings in a facility, unable to cope and uncertain what is going on around her, to simply feel abandoned! HOME is where we feel belonging, where things are predictable, where we feel safe. Comfort and reassurance, NOT re-orientation, is the real need here. Let them know you are there for them and that they are safe.
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Anyone living in a facility, with or without dementia, wants to go home. My question is this - if they have dementia, are YOU willing and able to put up with all of the problems, needs and bad behaviors of these people. Do you realize how much YOUR life will be impacted? Don't do it. They are where they belong if they have dementia. Think of your own life and needs first if they are in a safe place. Do NOT take them home.
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There are options for IN HOME CARE! The worst thing we did for my sister was put her in a home! Many of these homes are terrible. They killed my sister during the shut down. Denied her food and water.
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worriedinCali Sep 2020
Not everyone can afford home care and for those lucky enough to get the government to pay for it, its still not enough help. The OP doesn’t need a Guilt trip.
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The aide was out of line and should be re-educated, if not fired. (I would hope the latter). His suggestion could be very dangerous. YES, inform the Director of Nursing. She is the aide's supervisor...she/he is next in the chain of command. But don't hesitate to go direct to the Administrator if you do not receive a prompt and adequate response. You have made a difficult but wise decision. Stick with it and do not feel guilty.
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Was there any conversation before the comment was made? Something along the lines of "I just do not know what to do with him" or "what would you do?". Or was it just out of the blue?
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The aide needs re-educating. Caregivers have enough stress and deal with constant uncertainty. I’m so sorry this happened.
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First of all how long has your father been in hospice.? Second how much longer does he really have on this earth? And third how much of yourself are you willing to give. If your father is not difficult to care for why is it a problem he cared for you for years he provided for you so many young people nowadays don’t want to give them self it’s too much if that’s the case, you could still bring them home and hire someone to care for him at least five or six hours a day which would give you free time to do what you needed to do and if you have siblings ask them to want to help. He’s only asking for one thing and the time he has left to be able to go home. Why is that so difficult to understand.
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Marykk Sep 2020
I am so sorry rufus67 but I find your response to be very self centered and akin to emotional blackmail. Under normal circumstances a person has a child when they are young and capable of caring for them. The goal is to teach them how to prepare for life as independent individuals. Unfortunately as we age so do our parents. Physical limitations and our own life's obligations do not always mesh with our loved ones needs. Many families must work, with retirement a dream, to maintain healthcare benefits and plan for their own retirement. You seriously cannot compare changing a child's diaper with a 150-250lb dead weight body. You can teach a child how to progress. There is no teaching a broken mind. It will NEVER get better or easier. Many families are left with heartbreaking decisions. Mine have caused EXTREME anxiety. She's my mother and I want to take care of her. How can I when I suffer with extreme pain that leaves me unable to walk? My role as a daughter is to provide, to the best of my ability, a safe and stable environment. I HAVE looked into keeping her in her apartment. It is financially impossible. Her rent is over $3300per month. This does NOT include phone, food, TV, clothing, medication and sundries. To hire someone for the 6hrs you mention. That would cost $23x6=$138per day x 7days=$966per week x 4wks=$3,864per month + rent=$7,164.00 total. Remember all the things rent does not cover. Not trying to be sarcastic but, Mom lives on SS $1,062per month + $1,000 (approx) in investment dividends (thank God her 2nd husband didn't gamble away ALL she had). Now please tell me how can she afford her apt? No one has a tree to grab the extra $5,102 from that you seem to think is no problem. I have one sibling and he is doing the best he can. He too has his own financial obligations and physical limits. You can teach a child that certain behavior is unacceptable. Dementia doesn't care nor remember. Many elders are so set in their ways that their demands are completely unrealistic. Don't even try to compare the poop of an infant with that of a 200lb adult that hasn't gone in days. Just don't! I can, however, provide you with the graphics and smells for your pleasure. I speak for many when I say that we struggle and our hearts break over and over regarding the "right" decisions. We suffer from insurmountable guilt! For you say "only one thing" is unrealistic and cruel. If you are a martyr or saint it is unspeakable to lord yourself over us mere mortals. I LOVE my mother with all of my heart and soul. How dare you pass judgement. May God forgive you.
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Imho, you don't rely on the words of an aide. You cannot nor should not care for him at home.
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He will never get over "no place like home" until he gets worse and unable. It is tuff for you...but you have to. Your relationship bond with him and you will never go away. Give him the best "warmth and carying" in everything you say and do. Some mild meds' will help him adjust.
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sounds like a lot of info missing, does he have dementia (they all say they want to go home), but "what home" are they talking about? is it their home when they were little or when grown.  Maybe the aide just didn't want to be bothered or was tired of him repeating the same thing a lot.  If you can't take care of him physically, mentally, speak with the head nurse, admin person and indicate what the aide told you and find out why.  It's not in the aide decision of telling the family what to do.  don't feel guilty because you can't care for him, not everyone is equipped mentally, physically to care for someone with dementia......its a lot of work in all ways.  Speak with the admin person and make sure to mention who the aide was and what they told you.  wishing you luck
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