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"My brother had good intentions when asking our mother to live with he and his wife. However, as her health declined and she needed care, he lacks the compassion, patience and skills to do so. He has become verbally abusive so I contacted Adult Protective Services. My two older sisters supported my decision and now he won't allow us to see our mother. Is there anything we can do?"
What is the better way to handle a situation of this sort. By that I mean if a primary caregiver (with POA) is being abusive in any way what can a "secondary" caregiver do? From the experience described above, it seems that going to the authorities isn't the best solution. Being kept from the loved one is the greatest fear. I am doing everything I can to help. I've put my life on hold for almost two years now (living in their home, and for a year before that moving from my longtime home to be nearby them) but I'm "not giving enough" for the primary caregiver. (Nothing would ever be good enough for this person.) He refuses respite. His sister and the CNA (that he pays) go along with his actions, such as hitting my mom back when she hits him in the glasses or hearing aid. (When she hits him I feel that it is because he is being too impatient and doesn't have any empathy for her, rather, insisting that she instantly respond to his commands and adhere to his schedule and agenda.) I feel that my complaints and anger about this situation is causing him, his sister, and the paid CNA to try to freeze me out. He won't come right out and ask me to leave because he knows that he couldn't do it without me. I'm at the end of my rope, not because of caring for my loved one with ALZ but because of having to deal with the primary caregiver (my SF of almost 30 years). It's tearing my heart apart seeing his impatience and roughness toward my mom who has always been kind, generous and patient. I'm going to see if I can find someone to counsel me, which won't be easy since I've relocated to this rural area. I recently bought my own place to try and establish some boundaries with him but I haven't moved in yet because I'm afraid that he will retaliate by keeping me away from my mom or even putting her in a NH without me knowing anything or some other way to block me from being with my mom. Help! Advice?!

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My mother has moderate dementia, and is wheelchair bound.
She has 24-hour home care. I visit her two or three times
each week. Sometimes when I come she becomes irritable
and non-cooperative, and usually the aide says she was
okay before I arrived. I don't believe my behavior triggers
her mood change, but my presence provides her with
two caregivers to choose between and it may confuse
her, or simply give her an opportunity to play us off
against each other (as she might have done as a 3-year old).
I have learned that sometimes, if I take myself out of
the room, she resumes her cooperative behavior
with the home aide. And sometimes the home-aide
will step out of the room to see if her absence causes
my mother to be more amiable to me - sometimes it
works.
As others have suggested, your stepfather
may be under additional stress due to his own
health problems. And in your mother he has
to watch a future that may become his. And
his own advancing age is bound to be making
his patience and his emotional flexibility weaker.
You and your stepfather are both having
to confront the feelings of helplessness and
isolation that are almost inevitable when caring
for someone with dementia or with any other
terminal disease. It is possible that you
and he might benefit from attending a
caregiver support group - in such a
setting you might be able to talk to
each other about how this experience
is affecting you and about how you
might be more supportive of each other.
If he has been married to your mother
for 30 years it is reasonable to assume
that he loved her and probably still
loves her, or at least the woman she
used to be. This dementia is robbing
both of you of the woman you used to
know, and though you love her differently
you have that love and that loss in common.
If he sees you trying to understand him,
it might help him to adapt himself more
to the situation.
My father suffered from mild dementia
for almost two years before he died of
pneumonia. My mother refused to believe
there was anything wrong with him, and they
refused to get even part-time home-care
for him. When his memory failed she
would most often scold him to try harder
rather than help or comfort him. From the
outside it looked like emotional abuse.
But I know that she was denying the reality
because it made her feel helpless and she
was afraid of losing him. Having no
practical remedies available, she was
trying to "cure" him by shear force of will.
When I tried to intervene, they would
close ranks on me, each defending the
other from me, and scolding me for
not seeing how much they loved each other.
Who knew ? It wasn't what I
would have wished for them, and the
life my mother has now isn't what I
would wish for her. But it was and is
as much as they were willing or able
to receive.
Every case of dementia is different,
every marriage is different. From the outside
we can only do our best to help, and to
keep adjusting to something that keeps
changing without warning. Somehow
that rarely seems like enough, but it
has to be. We need to learn to accept
help when we can find it, and to do the
best we can within our limitations, and
not blame ourselves for being less than perfect.
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Your councilor is right. this is not your fault so don't take ownership of it. Step outside the box and direct traffic from there.
SF is fighting his own battles right now and desperately afraid he is going to loose. Did he have a Prostatectomy? If so the side effects take an enormous toll on a man. Far more than you can anticipate
Don't expect him to care for Mom and Dad get an aide in for the hours you are at work. Hospice may have a list of people they have come across that they feel are competent. they won't recommend anyone but from my experience do not have anyone on that list they would not trust.
Why is hospice giving antibiotics to someone who is unresponsive? you may want to question any other life prolonging ideas they may have ?IVs tube feeding that is not the hospice philosophy
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Geedeeooo, I'm so relieved to hear from you - been worrying I might have prodded you into trouble. I didn't realise your SF's situation (what's the chemo for?). I'm sorry, however ill he might be it still isn't ok for him to maltreat your mother or anyone else, but it could explain why he's less able to control himself than he ought to be.

Your counsellor is absolutely right. None of this is your fault. And given the circumstances, you are doing your best to control what parts of them you can.

Do you have local friends who you could invite home for coffee, some companionship? Good friends, who would understand that there isn't exactly a party atmosphere in the place, and who would just visit to support you every so often?

The other idea that comes to mind is, given that your mother is currently ill, and your SF (I expect he thinks he's soldiering on, but) must be feeling pretty terrible on a 4th round of chemo, quite apart from the underlying disease, could you make a case for getting in some additional help a couple of hours a day, while you're out at work for example, only this time offer to take charge of finding a properly qualified, properly trained aide who understands dementia? You could say it's just temporary, to help everyone over this rough patch? Just an idea.

Or have I missed something important? - you say hospice started antibiotics? When did they get involved, what's happening with that?

It's so sweet of you to think of me/us, too. Actually I am preoccupied - my mother had an assessment at the Memory Clinic on Friday to attempt to diagnose her dementia; and long story short they know it's dementia but the cause and type basically could be anything, take your pick. I don't blame them, they're doing their best and she's very complicated, and she can't have an MRI; but oh goodness what wouldn't I give to see what's going on in her head??? And to know what's coming next… but I think that's true for all of us.

You are doing your best, and what's happening to your mother would be worse if you weren't there. Keep gently pushing. Hope her treatment goes well. I can't ill-wish your SF, so I have to hope he feels better too - and that then his temper will improve radically! Keep us posted xxx
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Thanks for that countrymouse. I'm still standing. My SF had his fourth round of chemo this week. That is making him think, and it affects him physically also. It's been not too bad. I think he really wants to be as nice as he thinks of himself, but he just can't. I have completely given up on reasoning with him, his sisters, or the hired caregiver. I just don't trust any of them. I'm here except when at work and I try to anticipate what my mom is doing and what he is going to do next so I can prevent or deflect anything. My mom stayed in bed all day today, maybe a cold, maybe an infection. Hospice started antibiotic today. She has been non-responsive and SF is fatigued. Quiet here right now. Hopefully the weekend will be ok. The last incident was a few nights ago. We were putting mama in bed and we use a sit to stand lift which has a strap around the back and under each arm and then attaches to the lifting machine. Once we get her on the bed we remove the strap. My mom is frightened of change, movement, etc. As SF tries to remove the strap from under her arms, mama grabs the loops. Usually in a situation like that SF would jerk it away from her, this time he threw the other end back at her said, "Just keep it I don't care!" He just has a hair trigger temper, no patience, and no empathy. Towards me the latest jab was when I'd come in from work, he told me that mama had a good day until about 20 minutes ago (the amount of time that I had been there). I'm trying to keep my mouth shut. I'm trying to see reality in the midst of insanity. I'm trying to look to the future. In regard to a different but equally heartbreaking family situation, I had a counselor tell me to keep reminding myself that I didn't cause this situation, I'm doing the best that I can, and I don't have any control over this situation. So I try to keep that in mind.

I hope your situation is bearable and you are taking care of yourself. Thanks for reaching out to me when you are already giving so much of yourself! Thanks for being a "care"giver!
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Geedeeooo how are you? Thinking of you x
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Absolutely agree. report the abuse to the police AND press charges. keep a log of everything you see and photograph any injuries.
Is the CNA actually trained or does she just do it. if she is trained she is probably a mandated reporter at least for child abuse. I realize your mother is not a child so the primary responsibility is going to fall on you. If charges are brought against the caregivers you will also be vulnerable.
Your mother has dementia which is a disease that continues to progress and she is clearly no longer able to follow commands or jump when action is demanded. that is a fact of life and is not going to change however much aversion therapy is applied. She will just become more confused and angrier so the abuse will escalate. Now is the time for action. Do you have Catholic Charities in your area. they assist abused spouses and have councilors. there may be a national hotline you can call and they may refer you to someone in your area.
Have you thought out the next step? you say you have purchased a home nearby. Is it suitable and are you prepared to take your mother there and become her sole caregiver? Can you afford paid help? Would it actually be better if Mom was in residential care? You have a lot of decisions to make but the current abuse can not be allowed to continue
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Jinx I agree that APS won't necessarily take immediate action - but if this abuse is not reported, you can guarantee they won't. Got to start somewhere, and if nothing is done then geedeeoo becomes equally culpable.

The other big difference is that she's living right there, on the spot, and therefore in a position to insist and keep on insisting - right down to pressing charges if it comes to it. What she can't do is just live with it.
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I would threaten to call the police and report him for abuse and assault. Why isn't that the best solution? At least they'd be on alert. No way, with my rather fiery temper, could I let this go on. If you have to, hire some help, and get your mom out of that house, move her in with you and get her away from that SOB and the losers that stand there and allow this abuse to go on, saying nothing. If this were my mom, there would be war. I would literally have physically attacked this man before now if I had seen him hit my mom the way you're describing. Tell him that if he hits your mom again, you'll see him in jail. The end.
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But CM, reporting it doesn't ensure that anything will be done! APS has limited resources. If SF is just slapping her without leaving marks - which is still abuse - they will probably report that the situation is OK.
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You are living long-term in the house and having to witness your stepfather hitting your mother. His given reason - that this is retaliation, combined with some kind of aversion therapy? - does not justify what is straightforward physical abuse. You have a duty to report it. So does his sister. Certainly so does the paid CNA, who moreover probably has a professional duty of care. Not one of the three of you - yourself, your aunt-by-marriage, certainly not the nurse - has any excuse for failing to blow the whistle. If your step father cannot care for your mother without abusing her, then he can't care for her. I'm sorry to sound harsh, but to me this is a no-brainer. Call APS now, stay living where you're living, call the police if necessary and get this situation in hand.

It is ironic that your reluctance to report the abuse is related to your mother's vulnerability, and your fear that the abuse may continue or worsen if you do anything about it. But the more vulnerable she is, the more she needs protecting. If not by you, then by whom?
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One of the spouses getting dementia rarely improves the relationship, unless the caregiving one is really open to change and growth.

My husband had dementia. For a while we had a visiting nurse come in weekly. She once said, "I really love coming here. I love to see the mutual respect in your relationship." I thought that was very strange. Don't all couples have mutual respect? I have since learned that no, that is not universal, and if a marriage has flaws before the huge challenge of dementia sets in, they are likely to be magnified by the challenge.

Your parents apparently had what you and I apparently consider less than an ideal relationship. Your mother was apparently also coming to that conclusion and was considering getting out of it. It is too bad that she did not, because as things stand now, it doesn't seem likely that her husband is going to change, and that her disabilities have even made him worse.

What can you do? It is not likely SF is going to care what you say. Is there anyone in his life he might listen to? Is he a church-goer? Is there a doctor, lawyer, best buddy he respects? A golf buddy or fellow bowler? ANYONE who could say, "Gee you really have it tough with your wife the way she is. How is it going?" and perhaps bring the conversation around to the need for patience? It is too bad you can't count on his sister for that role.

Have you considered that life in a memory care place might be better for your mom, where you could visit her every day if you wanted to? Of course it is not your decision, but I wonder if it would be a good thing is SF comes to the conclusion that he doesn't want to care for her.

My heart goes out to you. I hope you can find a therapist to talk to.
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SF has always been impatient and angry but I don't think physically abusive. My mom did want to leave him before the dementia got really bad but I have to accept that she signed over POA. The CNA is freelance, she is young and follows her employers (SF) wishes. His sister comes once a week for the day. Since I have been complaining and angry about the situation she has come to his defense every time. I don't plan on trying to get her help any more. SF has said, "I know everything" and is too stubborn to learn anything new or take advice from anyone.
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Was your stepfather impatient and abusive to your mom before she got dementia? What has been the nature of their relationship?

Does the CNA work through an agency? If she is hitting her client she is certainly violating the agency's policies. Or do you mean the CNA doesn't object to his behavior?

What is his sister's role in this household?

Would stepDad be open to geting some training in how to deal with people who have dementia?

Please provide a little more detail about this awful situation.
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