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cheshirekitti Asked July 2012

What to do when Mom can't make decisions?

I just returned from a vacation? Visiting my mom in California, I live in Texas. The WHOLE time was spent discussing, hashing and rehashing Mom's current declining condition of advanced Parkinson's, she has has two strokes that we know of, fallen numerous times, this last fall she struck her head on the tub and broke a rib. She is blind due to Macula degeneration and cataracts and hard of hearing. Mobility is totally reliant upon motorized wheelchair.

My brother 51 lives with her. Thankfully he was called back to work full-time after being unemployed for 1yr.

My sister comes in on Mon,Wed,Fri at 12noon until 2pm. The rest of the time Mom is alone.

There are NO services for help due to Calif. budget nightmare.

All of us, Mom, sister, brother and myself decided I would talk with my family(which I have and they are completely onboard) with Mom coming to live with us in Texas. There are services here available that are not in Calif. Financially we can provide here.

When I left I set a time limit until July 31st deadline for non-changeable decision of "yes" or "no" she is coming to live with us. See I have done this and got everything set up only to have her back out at last minute. I won't do this again.

Even now AGAIN she is wavering. We have beaten this poor dead horse all we can.

Short of her falling and becoming hospitalized forcing the issue of a nursing home...there is nothing I can fathom as an answer.

I came home so emotionally and mentally drained and exhausted.

My sister has the Durable Power of Attorney for medical decisions. But how does a child enforce that on their parent? The responsibility is cruel.

I feel so guilty because when you think of it, it would almost be better that she fall forcing the whole hospital/nursing home issue.

HELP!!!

Labs4me Mar 2013
Some states have what they call self-abuse laws, when a senior is living alone and doesn't properly care for him/herself. Call adult protective services in the state she lives in. This may be your only option to get this situation remedied.

jeannegibbs Jul 2012
"I HATE this...I am seeing my Mom disappearing! And I am helpless to stop it. You know I have always said that Alzheimer's, Parkinson's & Dementia are all connected. I would like to know just how far apart they really are from each other."

You are right, cheshirekitti. Dementia takes our loved ones from us little by little, brain cell by brain cell, and we are helpless to stop it. (Tons of research is going on all over the world, and maybe some day there will be ways to stop it or even prevent it, but that is not how it is now.)

Alzheimer's Disease (AD) is the most common form of progressive dementia. It is the form most of us are familiar with. Parkinson's Disease (PD) does not necessarily include dementia, but a large percentage (I've seen 40%) of PD sufferers do develop dementia. Parkinson's with Dementia (PDD) usually is a different form of dementia than AD.

We can't stop the progression of dementia when our loved ones have it. (In many cases some of the symptoms can be helped, but there is no cure.) I think it most helpful to recognize and accept that there is a disease process present, and the loved one CANNOT help the demented behavior.

Your mother doesn't remember that she's been told over and over that she can only take 3 things. You and your sister are the ones with good memories, and it is up to you to act in Mom's best interests whether her memory is working correctly or not.

Facing that a loved one has dementia is very, very stressful and painful and difficult. Allow yourself to mourn that loss, even in the midst of all the responsibility piling up in caring for her.

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cheshirekitti Jul 2012
Governor "know nothing" Brown is doing what he has always done...make a huge mess of things. THAT'S why he lost the election after his FIRST time at being Governor of California...Californians got fed up with him (the apple doesn't fall far from the tree in this case). He ran stating he had no solutions, no answers, he didn't know what to do...and yet...he was voted for a 2nd time to office!!! Oi!

Anyway...now I hear from my sis that my mom was telling her that she wanted to make a list of things to bring with her to Texas!!! Arrggghhhhh! Over and over we have told her NOTHING will go with her with the exception of 3 things.

I can't get my sister either to acknowledge that Mom just does not understand. She has become of such a mind that she does not comprehend. At time there are bits of understanding...but it is soon overtaken by lack of comprehending and loss of memory.

I HATE this...I am seeing my Mom disappearing! And I am helpless to stop it. You know I have always said that Alzheimer's, Parkinson's & Dementia are all connected. I would like to know just how far apart they really are from each other. I wonder how long my mom will know me. After her stroke, recognition of people was badly affected. She didn't know my sister or my brother. It took a while for that to come back.

You all are right...my brother is NOT helping either...he IS NOT encouraging Mom to go. He can't handle the "unknown" of being "on his own". My mom is stuck to this "babying" of him and has since he was a little kid. THAT bond is held fast by a very STRONG glue.

You all have confirmed things even I didn't want to acknowledge yet I have understood and seen...denial in myself. Where is the line drawn? My sister now has informed me that my nephew will be with my Mom the hours my brother goes to work and she will fill in on his off times. My nephew will charge I think $8.50/hr. to do this (down from 4hrs per day @ $10.00/hr).

All under the table.

I cannot agree to this, simply because it is stiffing paying taxes, it is not right. I am a believer and it is not in line with God's Word either, it is ethically wrong.

When I brought this before my husband and daughter, the first words out of their mouths is "Why is he charging?" "This is his grandmother!" "It should be done because he loves her"

It is a HUGE responsibility...He won't even go to obtain CPR certification in case of an emergency!

I am getting angry about the whole situation...I am almost at that point of "ENOUGH". You know...when your mother has had "ENOUGH"?

I am here trying to settle the housing situation, I have to speak with our landlord to see if I can get us out of our lease without financial binding, I am enlisting the help of rental agents to find suitable housing, searching rental listings, filling out contact info for details of house, set up viewing appts., have contacted a couple real estate attorneys for advice on the lease situation, I am to receive a call from one tomorrow (that in its self will be a detailed process), THEN we will possibly have to PRE-LEASE because of the student situation here in Bryan/Collegestation, TX (A&M Students), taking on more financial responsibility, then packing our things, moving, cleaning to a MAKE READY state.

Oh...but Julia can do this..yada, yada, yada...

That's the way it's always been...because Julia is strong...she can handle it...

Right...handle it until...I have had ENOUGH. You remember Julia Sugarbaker on Designing Women???? That is when I have had ENOUGH.

Sorry...but this tea kettle had to let off some steam...

THANK YOU ALL...THANK YOU ALL SO MUCH...I just wish my sister had the wherewithall to get onto this site and read. I've told her, I've given her the link, I've sent her copies of your advice and input, I've given her the web address...but does she??? OHHHHH NOOOOOO. That would be to responsible.

Anyway...I'll stop now...again...

THANK YOU ALL

anonymous95109 Jul 2012
Cheshirekitti: I don't know if you or your sister have checked with the Area on Aging in your mom's area, but if you haven't, please do so personally. I know that California is in a mess financially and that some of the services that used to be available to help seniors stay in their homes have been cut back and/or eliminated.

Nevertheless, based on your mom's income, I do believe she would qualify for MediCal (California's equivalent to Medicaid). If she does qualify, it could be that she would also qualify for in-home care, possibly help with her utilities and medications. In Washington, a senior on Medicaid qualifies for a minimum of 5 hours a day in-home care. I'm not sure if that includes weekends. A portion of her SS is taken by MediCal to provide some services, but a senior who needs in home care comes out way ahead. MediCal would also cover her nursing home costs if she eventually is in need of full time care.

As a resident of California who moved to Washington state 8 years ago, I am not up on Ca.'s current rules and services. My suggestion is that you or your sis have a serious sit down meeting with the local Area on Aging and gather as much info as you can. You can call the local Social Services for your mom too for additional information. You may have done all of this, but I just wanted to make a few points in the hope that it helps.

I think you will have difficulties getting your mom to move. Your little brother is probably looking out for himself and not encouraging her to do what is best for her.

Good luck and keep us posted. At least we can give you moral support.

Hugs, Cattails

momhouseme Jul 2012
In the best of circumstances LO's will consult with one another and work together despite the poa order. That is the ideal. I became poa be default because my sister wouldn't talk to me as she thought i snuck into mom's town and stole moms money.

anonymous95109 Jul 2012
cheshirekitti: You might want to double check the POA. It usually lists a first person (your sister in this case) and then lists an alternate to act if the first person is not able or willing. It's not usually designated as a joint decision, the first person listed has the power to act regardless of the opinion of the second designee.

Please have your sis read it over the phone to you. Cattails

cheshirekitti Jul 2012
Just speaking with my sis, and found that my brother...the one that lives with her is also the second name on the POA. That throws a monkey wrench into the whole thing. So my sis would NOT be able to make the "decision" for mom that needs to be done, since HE is co-dependent on her and visa versa

momhouseme Jul 2012
wow. I am in CA and i think there are services. I first paid for a private hire caregiver to look after mom while I was at work. I understand that medicare will pay someone to come in (and that could be a daughter/son) and care for your LO 5 days a week for 1150 an hour. You should check with aging and adult services and social workers at hospitals. My dad was a veteran and my mom just got approved for veteran benefits in addition to her medicare.

I don't know how to do it and I would never suggest to you what you should do but I think mom should not be left alone. Can you and siblings start the long job of calling every aging agency to find out what they provide. Also, you might want to see if your mom is eligible for medi - cal (for CA). Ask them if they have any services for your mom. From what i understand there are numerous things that medicare offers but you have to ask - they are not forthcoming. If you listen to their recordings via phone you might learn about some of their services. Best of luck to you. Just keep mom safe. How is mom going to fend for herself when your brother is at work. This concerns me. In the meantime be patient with him if he has been the one caring for her one on one for the last year. It's a hard lonely job and if he stepped up to do it he should get some points. I could be all wrong here.

TammyGo Jul 2012
My sister and I also have an older half brother. Since mom divorced his father and they had a hard time of it when he was very young, my mom spoils him and makes excuses for him. Our brother can do no wrong. Even though he does not lift one finger to help her and our dad. He's an alcoholic but mother does not see this. She says it's because he's had such a hard life. He grew up with the same father that I did. Granted my dad was not my brothers real dad, but he treated him the same. He fed him, clothed him and took care of him the same as he did for my sister and I. This is always mom's excuse. Well my brother has a rude awakening coming. He thinks that when mom and dad pass on that he will get a huge reward??? He better think again. He will get his very equal share...100%...of nothing. It's the same thing my sister and I will get. My mom and dad will be lucky to have enough money saved up for us to take care of them til the end of their days. We are scrimping and saving right now to make sure the little savings they have will last as long as possible. Our brother does not do one thing to help us take care of mom and dad. He never visits or calls unless he is drunk. When they have been in the hospital in the past he has not visited or anything even though you would think he would visit his own mother. He is compleely useless.

Having explained my relationship with my own brother, I have to say that I think you are completely correct in saying that when your mom leaves that your brother will have to learn to be on his own. I think that the sooner you cut that apron string between them, the better things will be for you and your sister. Just beware if he still tries to manipulate your mom from a distance. My brother does this stuff all the time. It drive's us crazy!

anonymous119762 Jul 2012
It's time for some tough love, Sweetie.. Have a talk with Mom and your sister with the adult baby boy not present. Tell Mom that she needs to come to Texas or else you will be going to both the social security administration and the department of human services to get a social worker onboard. Actually all SSI recipients get the same amount of money and it is currently $698. You can bring all of this out to the social worker and you can also file in court to become her conservator and carefully explain her situation and the situation with your brother. This is tough but I know you are going to do what is best for your mom and believe it or not, this would be best for your brother. It is way past time for him to grow up.

cheshirekitti Jul 2012
To each of you who have been so understanding;
My 51yr old brother I think is in denial. He makes statements like, "Ma, how come last week you could do this? Now today you can't." He says this in a frustrated tone. I think because he is so close to the situation, he "knows" in the back of his mind, how PDD is progressing.

I spoke with my sister who has the POA (the one for health decisions), she stated that my mom can revoke it at any time.

My mom is probably like all of your moms...get momma mad and well you know.

But It's not like when I was a kid...nowadays it's more like a child throwing a tantrum.

With the co-dependency of my brother and my mom...it is really hard. I spoke with him last evening, let him know I was moving forward with necessary things to get this all set and wouldn't you know it????? I got the stonewall response..."well, I don't know, you better talk to mom" So I spoke with Mom...same thing...she is worried how "he" will survive, he will have to handle the rent, utilities,groceries on and on...what if the landlord raises the rent? What if he loses his job? If anything happens like that can "he" come live with us?

CRAP!!!

These two are joined at the hip!!! How in the world can I conquer this?!?!

When I was there...at least "he" was recognizing this...but then again...sad as it is...people will tell you what they think you "want" to hear...NOT what is honest.

I stated "the truth" is what I wanted, nothing more. A "Yes" or "No" not this .... "well I don't know" crap.

See I am very strong...I have had to learn the hard way...I have been through unbelievable stuff. So guess I have become VERY passionate about things...VERY strong at demanding truth...what is upright. I will be patient for as long as possible...but it's like a band aid...you want to feel that thing pulling each and every hair out one by one...or get it over with?

So...HERE WE GO AROUND THIS BUSH AGAIN!!!

I gave them (I may have already stated this) until July 31st to make a decision one way or another. I told them both...whatever answer they give...that is FINAL, there will be NO changing because I have done this already before, got "everything" to the point of even obtaining the lease agreement, everything, only to have THIS happen. I told them both that this will be the last time. My mom's response was, "don't threaten me".

As for "making" the decision for her...I am not sure I want the reprecussion of that. Would anyone want to travel with someone throwing a tantrum all the way from Calif to Texas?

Forgive me...today I am REALLY frustrated. My sister and I both have decided that we are going to leave things as they are until July 31st. NO MORE discussions with Mom or my brother. It's a "mute" subject until then.

Sorry to say this, but it's like my brother wants everybody to do and make decisions while he just sits in his room watching TV or playing video games. Sure he cleans house, does all the care for mom, works at his job. But...HEY we all have raised families, children healthy or sick, managed and manage households, handle finances, endured hardships.

I don't know...just rambling I guess. He has become "DEPENDENT" upon Mom's SSI, it makes life easy for him. Yet he has Mom as a tax deduction/dependent, pays 1/2 of their utilities, rent (which is only $950.00), groceries. He makes $16.00/hr., Mom $1172.00 SSI. He even has still at least $3,000.00 maybe more from his pay-out when he was laid off! See...he tends to be on the stingy side.

If Mom leaves...her money goes bye-bye and Mr. Man will have to be just that...Mr. Man.

He's had it this way since he was a baby...he has NEVER lived on his own...NEVER had a girlfriend (because he is so selfish), literally has NEVER been away from Mom.

THIS IS WHAT my sister and I am dealing with.

TammyGo Jul 2012
I am in a very similar situatin with my parents. They both have dementia and alzheimer's dz.

My sister and I have their power of attorney. We have been advised to get both our parents screened by a geriatric psych. doctor. If the dementia is advanced enough for them to do poorly on the psych. screening then we will be able to move them to a facility. We too are playing the waiting game. Waiting for some catastrophic event that might force mom and dad to leave their home. It's very stressful and I despise it. I want to prevent them from being hurt. I don't want to just set back and let it happen. Unfortunately this seems to be the only way right now. Their doctor, other health pros we have talked to, even Adult Protective Services visited their home and told us the same thing. It's very frustrating. But we are trying to give them all the time we can before we have to force the issue. We have had a lengthy talk with them and they are aware they they will eventually go to an assisted living/memory care facility. They are doing OK right now. Their living conditions are not wonderful but they beg us not to make a change. We check on them often and are just waiting till we have no other choice. It sucks but at least we do have a plan in place with the geriatric psych screener so that when things get to a certain point we will have a doctors recommendation for their care and it won't just be us forcing them to do something against thier will.

If your mom is to the point that it is dangerous for her to be alone then you are probably gonna have to make the hard decisions for her. With a geriatric psych doc on board, it's not just us making the decision. It's a doctors recommendation and mom and dad won't be able to argue with that. It's kind of taken a bit of the stress and maybe guilt off our shoulders. We don't want to go against our parents wishes but in the end we're gonna have to make sure they are properly cared for no matter how much they beg to stay in thier own home.

Jaye Jul 2012
I know it is tough when roles seem reversed... I am in the same situation. You need to do what is in your Mom's best interest, and that is keeping her safe! The reality is she will decline because of the health conditions you described. If you plan to move her do it sooner rather than later! Could you get her some home health care and home delivered meals. She is NEVER going to want to leave her home. Sadly though it sounds very much like you really have no choice. Care center or Nursing Home where she lives may be the best option. Moving her could be very very traumatic and physically hard too. I would really encourage you to do something sooner rather than wish you had!

labbydog Jul 2012
If your mother will have a better services available to her in Texas, and she will be living with you, you should move her. None of us likes change, and it gets worse as we age, but you have to consider her safety and her health. It does not sound like she has the ability to make an informed decision right now, so you have to do that for her. Also sounds as if your siblings are behind the decision for the move with you to Texas. I went through a similar situation moving my mother out o her house to a retirement home in the the SAME TOWN! It was right down to the wire and I finally said, "Mom, you have to do this. Everyone is worried about you when they can't reach you by phone." (She would do things like forget to hang up the phone, insisted she could still drive when she should not have been, etc.) It will be easier if you do the move sooner rather than later, too. And, expect a lot of grumbling and negativity once she moves to your house. But, your mother needs to be somewhere where someone can keep an eye on her. Even though your brother is with her in CA, sounds like she's had a few mishaps there already. I agree with jeannegibbs that she has earned the right to have someone else do the tedious details of day to day stuff. I think if all your sibs talk up the move, she will gradually come around to accepting it. JMHO.

jeannegibbs Jul 2012
cheshirekitti, I suspect that you and your sibs are a little bit in denial. Does that seem to fit?

You think that if you try hard enough you can get Mom to behave as she did before the dementia set in. That if only you explain it enough times and repeats yourselves, and talk to her individually and together enough, she will "get it" and make decisions accordingly.

Sorry. That is not how dementia works. It really sounds like she is, right now, at a point where she cannot take adequate care of her affairs and cannot make decisions in her own best interests.

She is lucky that she has caring children who can step in and do what needs to be done on her behalf. (Not that she is likely to recognize it as being lucky. Don't expect gratitude.)

She has earned the right to retire from the tedious details of financial affairs and the mundane tasks of daily living. Someone else should do her laundry and pay her bills and fix her meals.

Now is the time to put that POA into effect and make the hard decisions for her.

Good luck.

cheshirekitti Jul 2012
It is sad to watch her, because the more stressed she gets, the more confused she seems to be. Yes she is experiencing dementia, it takes continually explaining and repeating over and over. We try to explain step by step. Plus the fact that she needs a hearing aid so talking very loudly just so that she can hear is nerve racking. It is really frustrating that I cannot or we cannot have a conversation with each other (brother and sisters) without her constantly saying she can't hear us, speak up. You know even though there are three or four in the room...each conversation isn't about you or doesn't directly involve you. She then thinks we are conspiring. That hurts. It is getting to the point that she cannot handle her affairs either, the other day she wanted me to look at her bank account online, I told her that I am not privy to that since I do not live there and my sister and brother are the only ones with that right. She was upset that I would not. But it is a fact. I concern is that she will divulge such information someone like the grocery delivery guy. Worse yet, give account information to someone on the phone, which she almost did at one time, thank God my brother overheard her. She only has SSI, but still...

Thanks to you all for sharing and giving advice...it helps to hear from someone either going through this or who had already gone through this.

jeannegibbs Jul 2012
My heart goes out to you! You are trying so hard to do the right thing and also to respect Mother's right for self-determination. What a stressful time.

Is your mother still capable of acting in her own best interests? I know that a large percentage of persons with PD develop dementia (PDD), and even without PD we have a 50/50 chance of showing some signs of dementia by age 80. IF Mother is showing signs of dementia and is literally not able to make a decision, then I think that you and your siblings need to step in, make a decision, and implement it. You are fortunate that you all agree, especially that the POA agrees what would be best. I realize how extemely stressful this would be for all of you, but I think it is your responsibility to make decisions for her if she cannot.

But if you feel she is still "in her right mind" and capable of making a decision, then I guess you do need to wait until the issue is forced by a fall or other crisis. That too is extremely stressful on you.

(That the benefits available to her vary greatly depending on where she lives is, in my mind, disgraceful! But that is another subject.)

My heart goes out to you. Do your best, and don't beat yourself up if you can't resolve this perfectly.

JoyceW Jul 2012
I wasn't able to change my mother's living situation until something catastrophic happened. Then the doctor ordered her to have rehab in a skilled nursing facility. From there I found an acceptable nursing home. Mom could not survive on her own anymore. I couldn't move her closer to me due to the distance and her health issues. In the past Mom refused home health care, assisted living, and even my staying with her for a few months. Yes it seems cruel and I have mixed emotions all the time. She hates not having her life the way it used to be and I can't give her that. I could only try and find a place that I felt she would be cared for and safe. Good luck and hope the move goes smoothly. I would give anything if I could have moved my Mom closer to me when she was still capable of making such a move. I unfortunately went the tough love route and even though it is not perfect, I know she is safe. I didn't have any siblings or other relatives to discuss this with. It is good that you have family to rely on. Take care.

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