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My mother has been diagnosed with dementia. She is angry and abusive to my father. I know this is a symptom of the disease, as she was never like this before. My father is still active but feels he can’t leave her alone for long, and when he does, she verbally abused him when he gets home. She will also call my sister and I hysterical, calling my dad names and saying she feels abandoned and is going crazy in her house “all alone” whenever my dad leaves. We want to hire a caregiver to come take her out and do whatever she wants to do a few times a week, especially when my dad wants to get out of the house, but she refuses to entertain the idea and my dad is just leaving it up to her to decide if she wants a caregiver. I don’t think it should be entirely up to her. We are all affected by her disease and need help as well. Should we be leaving it up to mom to decide if she wants a caregiver or should we insist. I’m not sure which is the correct way to respond to her refusal. Any advice?

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Slschiller, you might want to have Mom checked for an Urinary Tract Infection. Such an infection can cause all types of behavioral problems on an older adult. Your Mom's primary doctor or urgent care can run a simple test.
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Bondgirlbelle Nov 2022
You really have me thinking now. My mom struggles to urinate and complains a lot about her flow or having accidents. We have had some really bad behavior. I just assumed she would be in pain like I am when I get one. However painkiller use daily could hide the pain of the infection. I will mention to my mom and the doctor.
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My aunt - who lives alone - also adamantly refused my arranging an aide to come in a few times a week for her. So, I changed the name, and instead of referring to the person as a "caregiver" or "aide", I told her that I was arranging a "health and wellness coordinator" or an "exercise trainer" (for balance and mobility) - and for that, she became very receptive - it was all in the way it was worded to her.

Perhaps you can try to reword the term "aide" into something more desirable - and maybe she'll become more receptive.

Wishing you all the best !
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Beatty Nov 2022
Oh sneaky..😁 I like!!
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Depending on how far gone she is, is whether she should be making any decisions. A demented mind should not have any authority.

I would find a companion, introduce her to mom and let them develop a friendship. Then she can visit with mom, regularly and if possible, take her out. Mom doesn't need to know she is a paid companion.

Your dad matters too and you do not want him to become a statistic because he can't get away and take care of himself. 40% of caregivers die before the person they are taking care of.

I would tell my dad that this needs to happen and it needs to be at least once, if not twice weekly.

That's my opinion on the matter.

Edit: he should also have her seen by a geriatric psychiatrist to get her on some meds to calm her down. It's not good for her to be upset all the time.
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It should not be up to your mom. Depending on how advanced her dementia is, things are going to need to happen whether she likes it or not. I tell my mom's caregivers that they need to be assertive with her. Don't ask her what she wants for breakfast - this is what I give her and she likes and just make it. Don't ask her if she wants to go in the sauna and then the shower - just say OK it's time for your sauna and walk her out there. If they asked her, 99% of the time she'd say no.

Good for your dad for getting out. But it sounds like leaving mom alone is NOT a good idea. So, start with a person that is there to clean the house. This could be their real job or just a term to not have her think that they're there to take care of her. She could do some cooking. Laundry, etc, etc. Once mom gets used to her, she can shift into more caregiving and less other things so dad can get a break and do some things that he likes to do.
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Everyone defers to mom, but she isn’t in her right mind. Time to make it clear that you’re in charge and realize you have to be. That will be best for everyone. She may never understand but she’s incapable of understanding a lot of things now. That’s how this disease is. Sorry you have this problem.
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Would you let a toddler make the decision as to whether a babysitter comes in to stay with them? Of course not.

Crass as it sounds, a person with dementia is regressing to a place where they can't make the decisions, much like a young child. A child gets to choose between the red shirt or the blue one, but they don't get a say in whether someone comes to stay with them or where they live.

It's time for the adults to take charge. It's overwhelming for your dad, so perhaps you and your sister can take some of the pressure off by deciding this for both of them.
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Beatty Nov 2022
"It's time for the adults to take charge".

Agree. The adults who possess good reasoning have to reason for those lacking it.
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"Dad is just leaving it up to her to decide if she wants a care giver".

Dad will need to adjust his thinking. Try this..
He needs to take the wheel on this one as Mom cannot drive safely.

"I don’t think it should be entirely up to her".

Correct. The help is for BOTH of them. To enable HIM to leave the house with peace of mind. To increase HER safety.

If Mom cannot reason that, has become selfish as they do, explain the help is for HIM.

I keep telling my LO this. Everytime the other cancels the support, attempts to cancel, fusses, tantrums etc.

It seems in my case, a long standing habit prevents the sensible one overruling - he really dislikes seeing her upset.

So. To be blunt... I say he has to toughen up.

The options are;

Option 1
Arrange the Aide.
Mom gets upset.
Dad feels a bit bad.. but Mom is left at home much SAFER.

Option 2.
No Aide.
A tantrum is avoided.
Dad feels slightly better, but then Mom is left home alone, distraught & panicked + left UNsafe. Dad feels bad about that.

Mom gets upset EITHER WAY.
Dad feels bad either way too (well until he understands..) But option 2 is SAFER.

Put those options to your Dad.

PS +1 speak to the Dr about meds for mood
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Discuss this with her doctor. There are meds that can help with this problem. Good luck.
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Move her to a home.She is too disruptive to all.
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BurntCaregiver Nov 2022
That's always an option too.
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You have gotten many good answers already. However, I understand the anguish you feel and for your Dad as well. The anguish the caregivers feel is sometimes overwhelming and so painful. I feel that as well, however, I finally realized that I needed some time for me as well, because my depression was getting too deep. I recommend you try to find honest, helpful aides, which is not easy, and go slowly towards the next steps whatever they may be. Wish you good luck and love.
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Correct this is not up to her to decide
do what is best for your family
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My mother doesn't have dementia but "only" depression and anxiety and due to the serious surgery awaiting her drives my father mad by refusing to let him go anywhere for more than three hours, guilt tripping him all the time: "You're supposed to take care of me". I see the toll it takes on him as for the first time in decades he is unable to sleep through the night. She doesn't need any help right now BTW, she just likes to blackmail us all with her problems. She cannot enjoy life and neither should we.
Please think about your dad's mental and physical health as well as the rest of the family. Your mother will sadly never improve, but your father might get worse. There have been cases of caretakers dying not long after their wards because their bodies couldn't take the strain anymore. The caregiver is a must, otherwise, it's the nursing home. In the end, you are the adult in charge, not your mom. I don't know how advanced her condition is, but my grandmother who was in the early stages would have understood that it's better to have an assistant than to be forced to move to a home.
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BurntCaregiver Nov 2022
@AnneGreen


Your father needs to cut her down straight away with some tough love. He needs to stop letting her control his life. He can go out anytime he wants and for as long as he wants. The "You're supposed to take care of me" does not mean your father has to become a slave to her abusive neediness. Yes, a person can use being needy as a form of abuse and manipulation. This is my mother to the letter.
She needs to be made to undertand in plain language that she can either get help for her depression and anxiety or lose her family. Your father should bring up the possibility of divorce. Then see how fast she starts curbing her behavior. She will learn to keep her abusive neediness in check if your father and her family stops humoring her and starts giving her the tough love she needs.
My mother doesn't have dementia but has depression and anxiety. She also refused to ever seek out mental health treatment for it. That's not my fault. It's not your father's fault or yours either. Your mother has no right to ruin your life or anyone else's because of her choice not to seek mental health treatment.
Tough love, my friend. Then even go Grey Rock if you have to. Good luck.
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Do not leave the decisions up to her. Hire someone who understands the situation and is expereinced. Over the years, the situation will get worse. She will need diapers and will need to be cleaned up daily. Eventually, she will need to be fed. Be string.
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I feel sorry for you all with such abuse hire a caregiver to give all of you a break
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Medication is needed for the anger/anxiety issues. Once this is taken care of then other decisions will fall into place. Just know that not all meds are the same and work the same on all patients it may take a few different flavors to get it right but start now.
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dkiely33 Nov 2022
Medication can help but it won't cure the dementia.
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Good Morning,

Have you paid a visit to a Geriatric Neuro Psychologist? Perhaps, a little bit of medication for anxiety or whatever the doctor recommends.

Sometimes just a small dose of something can make a good impact.

It's difficult when you have one elderly parent caring for the other elderly parent.

Oftentimes, the person who is ill cannot see that help is needed. They sense something is not right but I believe in calling on the troops. All hands on deck.

You need to build a team. The longer this goes on, your loved one ages and basically you are going up against old age. Usually, by the time they hit 80 there is more than one health problem to deal with.

The fact that you mentioned your mother was not a combative person at all prior to her diagnosis makes me think that how can you mother make decisions for herself. Her mind is aging. The brain is aging and she may think her husband is leaving her and going out without her and having a good time.

One morning a week respite program is not a bad idea either. Something in the neighborhood that provides breakfast and a hot lunch. There are some wonderful facilities with hard working people.

I can only imagine what it's like for your father to bathe your mother or shower her. Hopefully the bathroom is handicapped accessible with a shower chair, nozzle, etc.

You can have Mom' PCP do an assessment and write the scrip. That way if dad is ever on his back you have a slot for Mom in a pinch.

I hope that I was of some help to you. You want to do right by both of your parents and you sound like you are level-headed and a good daughter.
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Drugs. Something like Prozac
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dkiely33 Nov 2022
Are you for real?
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No, it is sounding as though your Mom cannot be left alone, and shouldn't be left alone, perhaps even briefly. I don't know her so I am hardly the last word here, but I think your Mom may now need a sitter in much the way a young child does.
If your Mom's personality is incredibly changed, if, that is, she is not the woman your Dad married and lived with all this time, it may be time for the family to conference about LTC placement for her. It isn't right that your Father is expected in his elder years to have to try to maintain care for her that he may not be physically or mentally able to do.
I would conference with the family (Dad included) and perhaps seek eval of either licensed social worker or neurologist to assess what is either here or may be coming for you as a family.
I am so sorry. You have described what is certainly the case for so many. You aren't alone. I know that doesn't help because some things just don't have good answers.
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You can not leave it up to mom about a caregiver.
Mom should also not be left alone.
Bring in the caregiver as a "friend" of yours. Your "friend" on day 1 can help dad with cleaning, doing laundry and just chatting with mom.
On day 2 dad can offer some lunch to your "friend" (Sue) and realize he is out of bread. "Sue" can stay and chat with mom while dad runs to the store for a loaf of bread. Dad can be gone for 30 minutes or so.
On day 3 dad has to get a haircut and will be gone for an hour or so.
Mom will get used to "Sue" and be more accepting of the help.
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No. It should NOT be up to Mom. Mom has dementia. That means she can't be held responsible to make good decisions. That is on her family now, sadly. And when you go through the process of that decision making, give simple and gentle explanations, and recognize that reactions may be quite volatile. There is not a good and easy answer; not everything can be fixed. Sometimes the only solutions are hard ones, full of rage and tears. But there is little choice and I know you recognize that. I sure am sorry and I surely do wish you the best.
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We had the exact same scenario except that my father had a serious progressive neurological disease. He cared for her as best he could. We could see that it was killing him. Against her will, we got someone to come in to help and got Mother heavy duty medication for those nights when she wanted to kill Pa. Mother is/was a very outgoing person which saved us. She was accepting of having more company. After Pa could no longer care for her(we decided) we had to place her in a memory home and I took Pa to live with me. Luckily, I enjoyed having him with me.
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No, you should not be " leaving it up to her ( your mother) to decide". You say that she has been diagnosed with " dementia". A dementia diagnosis limits severely a person's ability to make safe, rational decisions ( about anything). While her anger and lashing out is unfortunately often associated with dementia, as you say, it further identifies that the patient ( your mother) is not able to control her actions. She may be unsafe to others ( verbal abuse is verbal abuse regardless of where it comes from) and, she may be unsafe to herself.

So, you and your father/ family should definitely confer with her Physician for further referrals and assessment of your mother's needs for caregiving; and then make the decision best for All of you to get help with her. She will most likely be resistant regardless of who , when or where or how help us implemented so go ahead with whatever decision you and her POA decide is best after conferring with her Physician and/ or other specialists ( i.e . Geriatric etc).
Getting help " in the home" with her will require you being able to share with potential caregivers the pt behaviors etc and, for you to be able to select best; or perhaps it will be a " adult daycare" program that she could attend certain days of week outside the home to give your father and you all a break. " The ARK" Programs and others specialize in dementia care. Speak with Physician and Geriatric specialist in your area for help.

Practice good self care including not listening to her verbal abuse, ranting and raving...if you hang up the phone or redirect the conversation on phone or in person or walk away, she may be able still to associate her behaviors not being tolerated.

All that said, she is most likely also grieving the dramatic changes that she is experiencing and is both fearful and angry about these.

You, her husband and family are all also grieving these changes and the " loss" of the mother and wife you have all known.

Also enlist the support of your and her pastoral clergy support.

Practice good self care.....you will need all the care you can get from many different disciplines to help carry you all through the journey ahead.

Make decisions for your mother . She cannot make best decisions now.
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I agree with Alvadeer. Have a family conference. It is time to bring in the professionals. Work with your mom’s primary care provider. There might be a service through the hospital that specializes in “keeping aging family in their home environment as long as possible”. They should be helpful in both getting your father some help at home to bridge the time until she can be placed in a secure living environment. It will seem incredibly painful, but unfortunately with dementia there just is no happy choice and your mom is NEVER going to want help. My dad was the same way. I kept thinking after a fall, or feeling lonely, or after my pleas to say I needed some help that he would see the light and accept care. With dementia, they just cannot be rational. You cannot reason with dementia. The sooner you get help for her and your father, the sooner you might be able to get to a point where your dad and family have at least a little bit of peace. Your mom probably won’t ever be kind or happy again, but maybe she will have brief periods where she is pleasant. I can tell by your words that you will support your father, but don’t be afraid to suggest counseling for him. Please be sure he comes to a deep understanding that it is not his perceived failings, but rather this heart wrenching disease that has taken your mom away.
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Beekee Nov 2022
Agree. I made mistakes along the way by refusing to accept the reality of dementia. I consciously thought I was accepting it, but deep down, I was still thinking of this profoundly disabled person as my mother of decades ago, still trying pretend she could safely lead some type of independent life, still keeping her empty house while she was in full-time memory care so the rest of the family could visit her from out-of-state and still feel a sense of home. I sure wish I had the money back from those 3 years of property taxes and utility bills. It's a bitter pill, but with every decision large and small, you must always think of your parent as a profoundly mentally disabled person, no longer the capable, smart, kind person they used to be.
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My father does not have anger issues but he still has some pride and so when I recently brought in daytime caregivers, I didn’t call them that in his presence. I said that they were people who were going to help do a little house cleaning. From there a relationship can, and in his case, has developed. I think bringing someone in and expecting the loved one to immediately jump on board as this being someone that’s going to care for them can be too much all at once. So starting as a “housekeeper“ but with the housekeeper knowing that this is really a caretaking position and letting the relationship develop organically. Just my two cents and I know that every situation is different.
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You're being far too passive. If your mom has a verified diagnosis of dementia then it's time to get Power of Attorney (POA) because your father is not helping much here. And, like others said, she should not be left alone AT ALL.

Bottom line - you need to step up and take control. Stop letting your mom decide everything. She's mentally incapacitated so she should not be deciding the course of action here. Get legal power so you can navigate the medical road ahead with more leverage.
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Time to get mom placed so that your dad may get a few extra years without the stress. Please get your family a group appointment with the Geriatric Psychiatrist and make the decision as to where mom should be placed: get her diagnosed, if she hasn't been already and talk to an Elder Law Attorney about financing mom's assisted living journey.

Talk with your dad about staying in the house or moving to a different facility that offers Independent living.
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TouchMatters Nov 2022
Yes. Excellent supportive advice. Thanks.
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You and dad must repeat 1,000 time per day:
This is a profoundly mentally disabled person with permanent brain damage.
This is a profoundly mentally disabled person with permanent brain damage.
This is a profoundly mentally disabled person with permanent brain damage.
This is a profoundly mentally disabled person with permanent brain damage.
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TouchMatters Nov 2022
No he needs to leave the situation [temporarily and set limits - once he realizes he deserves to and can) and not be subjected to this. Arguing or trying to 'talk logic' is a waste of energy as it doesn't work with someone with dementia.
This loving soul (her husband) needs support - and a break.
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- You need to get support / help for YOUR DAD. It is not right nor healthy for him to be the brunt of her changing brain chemistry / dementia.

- Support your dad to walk away or shift out of her visual site when she is screaming / activated. Encourage him NOT ARGUE and NOT 'stand there' and take it. He can only take so much - as all of you can in this situation.

POA status is essential and needs to be in place yesterday. Get an attorney to help you make this happen.

* Consider medication - is she taking anything for anxiety ? depression ?

* You need to get someone in there. Period. End of discussion - although the beginning of this discussion.

- Try to find someone who is confident; won't take the abuse personally and will set limits.

- I would ease someone in, i.e., not have her / him do 'much' [the first 1-2 days or so]. Just be there. Let your mom warm up / get used to this person around - more so on her terms (she is frightened/fearful / bitchy / screaming / angry - this is to be expected].

ANY PESON EVERY PERSON DOESN'T HAVE TO STAND THERE AND TAKE IT. Say once "If you continue to scream or xxx, I will walk away. And then do it. She'll get it in her brain (somewhere) that her strategy isn't working. And, if she doesn't so be it.

Do not allow yourselves to be PUNCHING BAGS. This requires tough love.

Care provider could clean up the kitchen so she'd know they are there - and not bother(ing) with her.
SHE IS FRIGHTENED and acting out old (workable) behaviors to meet her needs. This is to be expected.

* Boundary setting is critically important / needed. Even with forms of dementia, I experienced client(s) to shift their behavior when I shifted / changed mine, i.e., set limits / boundaries / said I would give them a time out - and did (5 minutes to the rest of the day).

A strategy I use with a narrarsistic personality (in memory care) is saying she is 'in charge' , compliment her all the time... and letting her know she is helping staff to do there job. Ask her to 'report' back to you her observations. Tell her the help is for her husband, not her. Help your mom feel she has a job to do that is important .. so it fits with how she feels about herself.

Yes- of course the entire support system is affected. This is why:

You need to do what she needs and not allow her to dictate the care she needs. And others' need her to get this care, too. Everyone is drained and emotionally spent - and this will only get more intense if you do not set limits.
- Tell her what you are doing. (i.e., Getting helper). Do not argue. If she responds as she will - harshly, say ONCE I hear you . . . and then move on.
- She needs to realize that you are in control and doing what you feel she needs. She may or may not get it. Do not wait for her to understand (she may never get it). The changing brain / chemistry requires YOU to take control and care for her as she (and her husband/you, your sister, and your dad (?) needs.

Gena
Touch Matters
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My suggestion is that you hire someone. you don't discuss it with her, or leave anything up to her bc she is not competent to decide. but give a reason that she might be ok with like 'dad needs some help', or 'wouldn't it be nice to have someone do laundry?'
when you want her to decide something, give choices, like 'do you want this one or that one? not open-ended decisions. I don't ask my dad what he wants to wear, i say 'which of these two shirts?'
Then plan outings/activities that you know she enjoys and have the aide take her. i don't mean you should be dictatorial, but you have to take the lead. When my mom needed help in the house, i said it was for daddy. she was ok with that.
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Has mom always been mean? Only part of the answer, but has she been checked for a uti? My mom's a doll but when she has a uti she is Hell!
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