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I am a POA of my Mom, my father passed away unexpectedly in August. He had been taking care of my Mom who had some back issues, he dies, then the month later she breaks a hip. Mom is in an assisted living facility and she is doing very well with her recovery and physical therapy. She has memory and repeating issues, but is very very sharp on so much, she will repeat and forget but it is not all the time, she hasn't been diagnosed by a neurologist for possible dementia. She knows she repeats, and laughs it off She is 80 and is a very independent, feisty woman. Well, since she has been in the assisted living place, we have been telling her that this is a step down place for her to get stronger. Well, she is stronger, she is having PT there 3 times a week and her therapist is great. She mentions many times a day that she can't wait to get home, she is ready. Time to go.


I live in another state but spend much time there, with all business deals. etc. I have a few family members who want to keep her there, and not tell her that it is HER money that is being used to stay there, which you know it is outrageous. It is a beautiful place, but my Mom isn't rich, she could easily live there for up to 5 years without any issue, but after that, where and what would we do with her. She has longevity in her family and she could easily live to be near 90. I have been talking to home health agencies, and me myself could go there frequently I am retired. Other family members could help and her neighbors and friends would be there to pitch in too. Mom has a one floor small home and I would love for her to be able to go home. It is heartbreaking not telling her that she is there and it is HER money that is being used to pay. Mom is very very frugal and keeps up with her money issues, asks me every day about her bills (are they being paid) how much is in her bank. I am lying to her, and I know if we don't tell her the truth she is going to hate me too.


She trusts me and the other family members think she should stay there but I think giving her a shot at home, see how she does, stipulate stipulate stipulate that she can't do silly things that could cause her to hurt herself again. I need to discuss this with my family who want her there, I need to step up for Mom, it is heartbreaking to hear her say she can't wait to go home. So much has happened in a short period of time, Dad, her back, her hip, and now being put into a place that she wants to leave. Her room is very nice, but it is a room, the place is nice but it is an assisted living, not a lot of activity (or enough for her) going on there. I need to tell my family that she NEEDS to know she is paying for this place, she thinks Medicare is picking up the cost. Nope.. thank you all.. I am going crazy..

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Thank you for responding. Obviously you love your mom dearly. I appreciate that. Truly, I do.

You have not done this full time. I have. It is extremely hard. As far as relatives or anyone else. If they have not come forward to volunteer they will not now. Just telling you the hard truth.

Also, even if anyone would agree to a limited amount of time, how long do you really think that would last? Do you really want to take that risk? Trust me, it’s a gamble. Don’t gamble on something this important.

I also understand the situation with staff being short handed. How about this? I am reluctant to tell you this but I just want you to consider it please. I know you feel guilty about money but could you spend money on a sitter for the weekends? See how that works.

Look, the money she has now is well spent on her care. You are not wasting her money! That is what it should be spent on, right? What could possibly be more important?

Please let go of this guilt. I applaud you for contacting this group to get advice. That is admirable. I can see in your words how much you care. That doesn’t mean that you have to do all of the hands on work yourself and turn your life upside while doing it.

I also don’t think that you should recruit others to do what you aren’t able to do. It isn’t their responsibility and do you really want people whose heart isn’t in it to be caring for your mom?

Rethink your ideas. In this case, use logic and not your heart. Your mom will adjust and accept in time and she will come to know that a facility is the best choice for her.

Would you want to be a burden to others if you were in her shoes? I have two lovely daughters who love me, just like you love your mom. While I appreciate their love tremendously, I don’t ever want either of them being burdened with my care.

Do you know why I don’t want my daughters to be my caregivers? Because I want them to live their own lives and visit me as my daughters. I don’t want them to ever see themselves as my caregivers instead of my lovely daughters.
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You first of all need a neuro exam to see where on the dementia scale she is. Clearly she is there, as you recognize it would be possible to have her stay here and not understand it is her money. The facts are as they are. The money would run out in 5 year and she would well have another decade to live. What then? And she wants to try for home. You would, after diagnosis=--which is good to get NOW while a social worker can go to bat for you on this through where she is, telling the doc you need it before you can make a decision about home going--get together with family and decide what kind of DAILY check and support they can start with to see how she is doing. It is worth a try. Keep her money well invested and carefully invested to get the best rates in interest you can, as the likelihood of her needing care in future is high.
Step one. Diagnosis. No more denial. You need to have this.
Step two: Meet with the family who lives there. No dependence on "friends" as that does not ever last. Come up with a care plan.
Step three: Give it a try. Be HONEST and scrupulously so with your Mom. Some of us worry you cannot be alone on your own at home anymore. If this cannot work you will need to move to assisted living.

Is the home HER OWN HOME? If so it can be sold and you will have likely another five years of care for her.
Wishing you luck and hoping you will update us.
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Beatty Dec 2019
Alva, your Three Step approach - I found it extremely helpful. I hope it helps TN too.

When put so clearly, I can see people in my family are still stuck at Step One (in denial of diagnosis). Which is why Step Two (care plan) is inadequate & cannot accept Stage Three (next logical consequences).

Thank you.

So back to basics. Get the facts.
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I know you want to take your Mother home. But is it actually possible or advisable? Could she manage physically, take her medicines, eat well, cope cognitively? Family meeting with reports by Aide, Nurse, Physio, Doctor, Neurologist would enlighten. How much assistance is required for ADLs, fall risk etc?

Get all the info first. Then sit down & have a good cry if you need :( Change, old age & long distance are all hard. ((Hugs))
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anonymous978037 Dec 2019
thanks so much, it sure has been a stress filled few months. I do agree for sure on the meeting with the Aides, and all others involved. Mom is headstrong and she says she is going home, which she can of course. It is going to be a battle no matter what. thanks
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If she needs a village to keep her "independently" at home, and the villagers say that's a bad idea ... then a solution needs to be found that does not rely on them to take on her care. They won't take it on. (Frankly, I wouldn't, either.)

They may see signs of trouble that you can't see as a remote caregiver. (Nothing against remote caregivers. I've been one.)

In any case, there's no way to get people to cooperate with plans they do not agree with.

I do like NeedHelpWithMom's idea - perhaps consider moving her closer to you. Or, you may want to consider moving closer to her.
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NeedHelpWithMom Dec 2019
This is a sensible answer. No one is going to change their mind about being a caregiver to her in her home.

Why should they? It is not their responsibility to do it. Why would they give up their lives?
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Okay, I have another option that I thought of. Instead of asking others to care for her why don’t you move her to your city to be close to you?

You don’t mention if you are a son or daughter. Which are you? Just curious.

Sell her home. You will have extra money.
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anonymous978037 Dec 2019
thanks NeedhelpwithMom, I have thought about that option, moving her closer to us, or even moving her here with us, until things get bad. We have a wonderful relationship (which I know can and probably will change) It is very hard for me to think of her being somewhere now that she is unhappy at. She is pretty sharp of course her repeating things is bothersome, but it isn't all the time, I am her daughter. thanks so much..
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Sounds really unfair to the family living close to her if you let her come home, they'll be forced to care for her due to a decision they did not agree with.
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NeedHelpWithMom Dec 2019
They will not be forced. They can say no. They have already voiced their opinion by saying they don’t agree with her going home. If I were them I would flat out refuse to care for her.

I am not heartless. I cared for my mom for a bazillion years! It’s very hard! Why should they give up their lives? If the OP wants her to have a shot at home then let the OP move in with her. That would become a wake up call to reality.
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Just thinking about the situation more broadly. What does your mother do in a typical week when she's living at home? You say she's bored to tears in the ALF, I'm wondering what she's been missing out on during her "convalescence."

Where's the cat staying?
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NeedHelpWithMom Dec 2019
CM,

Good point!
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You live in another state. How can you possibly assess your mom’s situation? You can’t. Visiting every so often doesn’t count.

Still, you say she chose you and you have the authority to choose what you feel is best.

Do you really think others will care for your mom and be able to maintain what a professional staff does? Do you really think that you can handle an emergency that may occur being out of town?

As a visiting child you can’t do everything that she needs. It is a lot different than visiting a person in a facility. I did care for my elderly mom at home and it became too much for me.

Why don’t you discuss your concerns with her doctor? Get a professional opinion on where she should be. Ask the doctor to explain that she cannot be left alone.

Then you are no longer lying to your mom. Your profile says she has dementia so what makes you think she could go home just because she wants to leave where she is?

Most people say it is cheaper to be in a facility than to hire 24 hour care at home. So no need to feel guilty about the money being spent where she is now. Yes, old people can be frugal. My mom is extremely frugal but nothing in life is free!

She has 24 hour care where she is. That is a plus. What are the advantages of being alone at home while you are in another state?

Is this about what mom wants or is it about how your mom views you? Do you feel guilty? Do you fear mom will be angry with you knowing that she has to live in a facility? Have the doctor explain it is for her own safety if you can’t tell her yourself.

No one wants to see a parent lose their independence but I think you have an unrealistic view of what it takes to care for an elderly person. I do know what it’s like and I can tell you that it isn’t a walk in the park or a day at the beach. It is extremely hard work. It’s the toughest job that I ever had.

Best wishes to you and your mom.
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anonymous978037 Dec 2019
I appreciate your response. I have spent most of my time with her for the last four months, I have come home for a few days at a time. I take her to the Dr. all appointments, I do all the business end of things, I do have guilt of course, I have guilt not telling her that it is her money being used. I have guilt knowing that she is unhappy where she is. Of course she is in ALF, but as nice as the staff are, they are hard to find, they are understaffed and on the weekends there is only 1 nurse and maybe a few aides working, I again, appreciate your advice, but I have taken care of my mother in law for years, sis didn't live with us in the beginning, but I was responsible for her 16 hours a day. I know it is hard work. I also know that she is my Mom, she took care of me, and this is my turn to take care of her, as long as I can. I do know it is very hard work. I feel that it is something I should do.
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Expecting an 80 year old woman who 'repeats' herself a lot and has been through a ton of trauma lately not to do 'silly things that could cause her to hurt herself again' is wishful thinking, in my opinion. Repeating oneself is the first sign of dementia. Elderly people do not do things purposely to hurt themselves; they have poor balance and bad judgment & lack of focus that causes them to fall & injure themselves, let's face it. My soon to be 93 y/o mother has fallen approx. 40 times so far, and that's while she's been in Assisted Living!

I've had my mother in AL (not Skilled Nursing, there is a BIG difference) for 5+ years now, and there are a TON of activities to participate in. Not so much with Skilled Nursing. I agree with WorriedinCali that you have to go there YOURSELF to determine what's happening! Mother's money will run out in approx 18 months now and then I will apply for Medicaid to get her into Skilled Nursing. That's the routine..........you private pay until the money runs out, then Medicaid kicks in if the person qualifies. If not, you spend down your mother's money until she DOES qualify, then she goes into Skilled Nursing/Long Term Care.

Nobody knows how long a parent will live. What we do know, however, is that they must be kept as safe and secure as humanly possible while they are alive. Living at home with dementia, or with the start of dementia, and being expected to cook, clean, grocery shop, pay bills, or rely on family members to do it all FOR them becomes unrealistic after a while. If she's relying on others to do everything FOR her, then she's no longer truly living 'independently', either. To wait for an accident or emergency to occur before placing the parent in Assisted Living is not a good idea either, because then you're under the gun and stressed out to the max.

As far as the money matters go, I don't give my mother ANY information about her finances. She cannot really comprehend any of it ANYWAY, because my dad took care of all the money matters before he passed in 2015. I took over as financial and medical POA in 2014, and have been handling the finances ever since. I find it easier that way, instead of having to explain every transaction to my mother 100 times. She obsesses over money even NOT knowing how much she has in the bank, so what's the point in exacerbating her anxiety? Again, it's my goal to keep her as safe as possible, both physically AND mentally, until God decides to take her Home.

If you feel you MUST let your mother know about her finances rather than 'lie', then go ahead & do so. But prepare yourself for the additional headaches & aggravation that goes along with having her fight you tooth & nail on every single financial decision you NEED to make moving forward.

Best of luck!
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anonymous978037 Dec 2019
Hi Lealonnie, I appreciate your response. Mom has been through a lot so quickly, and I totally understand it. The unexpected death of my Dad hit us all very hard. Mom, when I say does silly things, she is a clean freak and was straightening a pleat of a curtain and fell. She is pretty good on her feet otherwise. She is 80, but other than the repeating and forgetting, you wouldn't think so. She is very sharp on current events, plans, family activity and other things. I agree, about the relying on neighbors and friends and I do worry about the cooking, and other household duties that she has always been used to.
Mom has always been frugal and has penny pinched all her life. Dad, was another story, she always says that if it wouldn't have been for her, they would have had nothing. She asks me daily about the incoming bills, the money in her checking account and they weren't rich by any means. The way it stands now, she could live in the AL facility for 5-6 years max, and longevity runs in her family on both sides. It hurts me badly when she asks daily about if this is costing her money, again, I tell therapeutic lies. She thinks that since she was in rehab before AL that the physical therapy people sent her to the AL (she doesn't know it is an AL) to get stronger, etc. She has gotten a lot stronger and gets around very well with her walker. She is bored to death there, the place, as beautiful as it is, doesn't seem to have sufficient activities for the residents. The women there, eat and usually go back to their rooms until the next meal. If it weren't for the television she has in her room she would go crazy she says.
I also have a brother and his wife who tell her she is staying at her "new" place and it is the best thing for her, and maybe it is, but the wife seems to have her opinion only to the point of telling my Mom that she can't have her beloved cat there (Mom could have the cat and it might make it better for her) Sister in law really has no business telling me what to do. I feel that I do owe to my Mom to tell her about Medicare not picking the cost of the AL. and the AL doesn't accept Medicare, it is a private facility. It is bothering me terribly and tonight when she asked again (for the 100th time) I almost told her, but I wanted to clear it with my brother. I am the POA and I don't and I am not trying to pat myself on the back, but my Mom chose me to do the business and I have been doing it all, even out of state. I also have medical. I just feel that Mom needs to know. I know I am maybe wanting something that isn't feasible, but sometimes quality of life is more important in my opinion I guess. I do appreciate your response and all responses on here. thanks!
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I think you need to go stay with mom in the AL for a week before you made any decisions as well as get a good cognitive assessment done. You aren’t there every day and overnight so you can’t possible know the true reality of your mother’s condition. If she has suspected dementia then she may be showtiming you. She may be wandering her room at night.

You cant expect friends and family to help her stay in her own home. Especially if she has dementia. They may be willing to help in the beginning but they will either burn out or be unwilling to deal with her dementia behaviors.
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NeedHelpWithMom Dec 2019
So true, Cali. Visiting from out of town is not the same as seeing a person on a regular basis.
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im in the same predicament - but Mom choice its more important than the entire family ..its a question of will because she known's whats best for her its kinda like a bucket list that belongs to her so do not hesitate in granting her own wish the nursing homes facility are far from the ideal place elderly end up dying here faster that they would do @ home if income its the problem well the solution its to in public assistance here in New York they pay for caring for your elderly its 15 to 20 $ per hour ..paid for ..by medicaid - Medicare SS...eventually i will remove my mom but not for the money but in principal - the facility is full of good intention but some bad one sleep in the cracks unchecked they're dangerous & Fearful besides their medicine its according to budged so they usually don't get the best of care in my mom case she doesn't get her med.s @ all only the basic convenience medicine - usually the family that has decition problem a social worker decides & her desition its usually in favor of her work place so beware that you should get a medical proxy document written by the court or online ..but you should care for her own interest not anyone else's now medicaid has changed so maybe the alternative its to negotiate her staying there in return for you to work @ the facility with her while she stays but . Family its First & it should be the last ..its the Alpha & Omega Principal. i hope this help thank you-
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worriedinCali Nov 2019
Neither Medicare or SS is paying $15-$20 an hour to care for the elderly. They don’t pay for home care, AL or long term care.
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My mother had short term memory problems for _years_ before it became a real challenge or danger to her independent living. After she returned to a bank to open a new account for the second time in 3 months, she went through all the neurological testing to determine she was in the early stages of MCI with no dementia. As the doctor explained to me, my mother attempted to open the account for a second time only because she forgot she had already opened a new account. That's a failure in having all the "data" she needed, not in basic thinking or cognitive ability. That's why Mom called for help when she realized something wasn't right. There are lots of supportive aids for short term memory problems, including making print outs of favorite recipes so you can check off each ingredient/step as it is performed. Mom lived independently in her home and then my home before a decline following a fall and my father's death caused physical and mental declines and the first dementia signs.

Your mother needs appropriate testing so you can make informed decisions with her input; how much weight you give your mother's input depends on what the testing reveals. No more lying. Your mother needs to be able to have complete faith in you.

You also need to accept your mother is not completely safe anywhere. She can fall again at home. She can also fall in IL, AL, MC, or even NH. When you consider arrangements you need to consider more how much time would pass before a fall would be detected and your mother receives help/treatment unless or until the fall risk is significant.

An adult day care with transportation to pick up your mother from her home and return her afterwards could allow your mother to continue living in her home while having a lot of activities and oversight. Bundled with some in home care to assist with housekeeping, meals, medication, etc each night could allow her to live safely in her home for some time.

I encourage you to consider assisting your mother to remain as independent as possible for as long as possible both because she will be happier and because it will extend the length of time her funds last.
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anonymous978037 Dec 2019
thank you so much for your response. I would like for my Mom to go back home, her home is important to her she and my father took great care of it It is a 1 story home. I have researched and checked into home health care, she already had a housekeeper too. She has neighbors who have been neighbors with my Mom and Dad too, for over 30 years and they are best of friends. Mom has grandkids who live near her, and many other people that could check on her as well. Adult daycare is a great idea too, her church has many functions and she has always enjoyed those. I just feel so bad that I am 'therapeutically lying to her" about the money for the AL, she is very sharp on her finances and always has been. When she asks me daily if Medicare is paying for the place it breaks my heart. She trusts me. Her AL is private and doesn't accept Medicaid. I just feel that she needs to know about the cost, she still thinks she is in a step down facility. I am able to be there for her as much as needed too, I am retired and can spend a lot of time helping her adjust. I do agree about the risk of her falling at the AL. It is a very nice place, but the weekends are not staffed too much, and the times I have been there, it can take one of the aides or nursing staff 10+ minutes to get to the area she is at. Mom is a very social person and the stimulation she needs, she isn't getting it there. It will be a real challenge to get others in my family to agree if she does go home.
thanks!
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It’s wise to see how she is cognitively and to see from those tests if she can manage herself at home.
Driving
medication management
ADL’s
Cooking
Bill paying
Active
Life line for safety / if a fall occurred.
Yard and or snow removal set up
Agree to some Hone Care services.
💗
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anonymous978037 Dec 2019
thank you for responding to my question. She is pretty cognitive, other than her forgetting things, but not all the time. She does always say "I just said that didn't I" we have tried the driving with her, and that would be another stipulation if she does go home.. no driving. She doesn't take very much meds and they are in a pill pack. Cooking, she hasn't really done very much in a while, but her best friend and I have already discussed us cooking food for her to freeze and take out to reheat, she would be able to make easy meals I believe. Bill paying, I have already been doing that for a while, but she is cognitive enough to know who to pay, and always asks if I have paid and how much, plus I have set up all bills on auto pay. She is a pretty active lady or was, she gets around in her walker well, and I can hardly keep up with her, she can get in my car faster than I can. She has a life alert already and my son who is a software engineer has checked into cameras and Alexa or Echo to put in the rooms she would be in mostly, so she could call for help if needed. She already has lawn care and we have continued that, no snow to speak of where she lives. She already has told me that she would agree to have Home Care services come as much as needed. I have spoken to a very reputable service and they can come and check the house and assess her. I really appreciate your advice. I am just so torn and feel so guilty not being truthful to her about her money each time she asks which is multiple times daily. She is very frugal and always has been and if she knew the cost of this facility she would be upset. At this time, she is very cognitive. A lot has happened to her very quickly , Dad passing away very unexpected, her hip, then the hip surgery with the anesthetic made her wacked out for 10 days or so but she came out of it I also think the isolation she has at the facility isn't helping her. She does have friends and family who stop by each day, some of her friends have taken her out to lunch which she loves. thanks again!
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If, in order to go back and live in her home, your mom needs the help of family, friends and neighbors, then your mom is no longer truly independent. She will believe that if many are orbiting around her and propping up that illusion. Short term memory issues are not just about repeating herself. My MIL seemed a little "forgetful" but competent until we realized she wasn't remember to eat. I'm not sure you have an understanding of dementia. You can't "logic" her out of doing "silly things". The hard part of it is looking at our LO and interacting with the "old" LO, but dementia changes that person so we no longer can react/live with them in the same ways as we did all the years prior.

If your mom is in a nice place, I would find out if they have Medicaid beds. If she runs out of money while there, they cannot kick her out if she goes onto Medicaid. Some places do not accommodate Medicaid recipients, so don't make any assumptions, find out for sure.

You mom does sound like she still has most of her faculties so you owe it to her to have the discussion of her future care and payment for it. From reading the many, many posts on this forum I would NOT depend on family, friends, neighbors chipping in to help (in the long-run) as her care will just increase and caregiving is unending and exhausting. Also, NHs provide healthy social interaction, which she will not have much of in her home. Loneliness is a huge and crushing problem for seniors.

It is unpleasant (to say the least) to disappoint and go against our parents' wishes. She will be very unhappy about not returning home but a care community seems the best for her based on your post. She's been through so much profound change in a short time. The money your parents saved is for just this use right now: her care, and hopefully not to leave an inheritance. I wish you clarity and confidence as you and your mom navigate her care decisions!
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anonymous978037 Dec 2019
thanks so much for your response. Mom hasn't been diagnosed with dementia as of yet. We have noticed her repeating in the last 6 months, but I know that the unexpected death of my Dad, and her breaking her hip 3 weeks later, then the anesthesia she had during her surgery took a while to get out of her system, which made her crazy for 10+ days, but she got much better afterwards. I believe the isolation of being her at the facility isn't helping her. She stays in her room (nice as it is) most of the time except for meals, a very quiet place with not enough stimulation for her. I again, believe I should be honest with her about her money, she is very frugal, always has been, and it breaks my heart every time she asks. I guess too, I have always looked at my parents as young. She had me when she was 17 and growing up with them, it always seemed like they were kids, we did things and even my Dad who died, golfed 3 times a week, was unbelievably active, he looked like he was 50, she as well, she was very active and at times none of us could keep up with them. When I see her in the AL, she doesn't look like it, she looks and acts much younger, she gets up each day, gets dressed, makeup, hair and all. I see the other ladies there, who seem semi out of it except for a few, they might not be that much older than my Mom, but they sure look and act it. I really appreciate your response..
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Um, if one might ask, what "silly things" did mom do that led to the broken hip?

Are you prepared to view her promise to you that she won't repeat that as something she will be able to remember?

Again, I think you need a "needs assessment" before you make any firm decisions.
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anonymous978037 Dec 2019
Thank you for your response. I have set up an assessment for next week. She has never seen a neurologist and her PCP is getting her into one as soon as possible. She had one appointment, but that was when she broke her hip, so we had to cancel. Mom has always been active and such a clean freak, 3 weeks after Dad died, I stayed with her until the day before she broke the hip, she was trying to straighten a pleat in a curtain, fell back and that is how she broke the hip. I do appreciate your response and advice.
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One thing you need to hold tight to, first of all.

Your mother gave YOU power of attorney. She trusted YOU to make decisions for her, to act for her, when she couldn't do things for herself.

So although it is fair and sensible to *discuss* options with the family, it is YOUR judgement that rules. Don't let others' opinions stop you doing what you believe is best for your mother.

I wouldn't waste time or risk going back over what your mother has already been told, who's been "lying" to her, whose idea it was to do whatever. From here, just look ahead. Tell the truth to your mother. You are here. Your needs are x, y, z. You have x much money, your income is $x per month, your household budget is $y, your care and health budget is $z. These are your options... 1) 2) 3)... and we can review them in (say) three, six, twelve months' time.

At the moment, with no diagnosis of dementia (and presumably no formal assessment of mental function?), not one of you has any right whatsoever to withhold information from your mother about your mother's affairs let alone make decisions that you know are in direct opposition to her wishes.

Who are these family members who are making you act against your better judgement? Do they know your mother and about her lifestyle much better than you do, or something like that which makes you defer to them?
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anonymous978037 Dec 2019
Wow, I so appreciate your response, I totally agree with all you posted. I am the POA, we have always had a great relationship, Mom made me the POA after Dad's death, due to just asking for help, and I am glad that I did it before she did break her hip. The advice you gave me about her money is great. I have a brother and especially his wife who are trying to run the show with this, I will say they do live in the same town, but I have been doing all of the business end of this, all Dr. appointments, banking, etc. My brother is great, he is doing things at the house, checking on it, etc. He has a wife who seems to think she can almost tell me what to do. She never agrees with anything that I mention to do, she always seems to question it, and she just gets to me. She hasn't been married to him very long, and again, I am always trying to keep the peace in the family, but I do need to step up for my Mom. Mom and I are very close, as I was to my father, and again, she trusted me to be the POA and I have to step up. My brother and his wife want to sell her home, and they have even told her that they should, and this place she is at should be her permanent home, which I think is terrible. I, again, appreciate your advice.. thanks
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So the other family members, who you expect to 'help' are saying Mum needs to stay in the AL? But you, who lives out of state feel Mum should be allowed to go home.

Has Mum had a consult with a neurologist? You say she has not been diagnosed with dementia by one, but you do not indicate if any testing has been done. If she has not been tested, that is where I would start.

Also as you are not there full time, Mum could very easily be show timing for you. What things are the rest of the family seeing that cause them concern and want her to stay in the AL?

You say there is not enough activity in the AL for Mum, what is missing and how can it be provided? What things would she be doing at home that she cannot do in the AL?
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anonymous978037 Dec 2019
thanks for your advice. My family members who do live in the city she is in, tell me that my Mom's mind is shot, which couldn't be farther from the truth. Of course, the memory has gotten a little worse, but the shock she has been put through in the last 4 months could attribute to it. Dad dying unexpectedly, her hip, the anesthesia she had during her surgery, made her act crazy for about 2 weeks, but it did eventually get through her system. Her going to the rehab eventually she became okay with it, She did all her physical therapy very well, and even the therapist said she was doing great, and had met all her goals with PT. She then moved to the AL without any knowledge of it, and we used the excuse that she needed to get stronger and this was a step down, she has now been there for 10 weeks and has picked up on it. She was having PT there at the AL and did well with that too, her PT therapist kept me up to date on her progress, now I am not saying that she could not fall again, because she could and I do worry about that. I am not there full time as you mentioned but I do go very frequently, and call her 3-4 times a day. As far as the activity, it is pretty sad, a few bingo games during the week, a movie and some singing group comes in that is about all. Mom has always been active and lots of social things in her life, she goes to the dining room 3 times a day, eats with the same ladies she knew before, then goes back to her room, since all the residents seem t do just that, the great room there is very nice, but usually they all go back to their room, as I mentioned in another response above, Mom has always been young looking and acting, as was my Dad, they were always busy and I always thought of them as younger than they were. Seeing her in a place that is almost dead, is heartbreaking. She does have visitors a lot and lots of phone calls, but her telling me she is going home soon is breaking my heart. I do appreciate your advice.
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I let MY mom return home after a “fatal” (LOL) stroke. She was in the hospital for 2 days and told her neuro that she didn’t like the food and wanted to go home. He told me to let her. There was family right next door, and they offered a good deal of help.

I slept at her house for 3 or 4 nights and SHE told ME to go home and I did. She continued to live by herself until she fell five years later in her home and broke her hip. The affects of THAT injury revealed full blown dementia, and after an unsuccessful (for all parties) stay at my house, she entered residential care and died there 5 1/2 years later.

We spent nearly a million on the 5 year’s residential care, and it was her money, and worth every cent, because she came to live a wonderful life within nursing home care.

My mother KNEW how much she paid for her original hospitalization, and paid all her bills herself. She thought the costs were HORRIFYING but understood why they were necessary. IF you decide to allow her an attempt at semi-independence for her you might be able to save face on keeping the facts about the bills from her by explaining that you ALL knew she’d be distressed about the costs but that the best medical advice was to move forward with her rehab, so that was why you did.

Has she had any OT aimed at assessing her skills with what she’d need to be able to do if/when she returned home? The OT’s input might be helpful to your decision making.

Your mom sounds SO MUCH like the situation my own dear mother was in, I think you might want to give her a chance. I knew she risked falling and other mishaps if she went home, and she had begun to show more symptoms of dementia before she fell.

In spite of all of it, I think I was right by giving her that chance to have the last 4 1/2 years in her home, and I suffer zero guilt or regret that I did it.

Highest hopes that the decision you and your family make is the best choice for all of you.
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anonymous978037 Dec 2019
thank you for your response. I do worry about my Mom going home in so many ways, like you mentioned she did have OT at the rehab before we moved her to the AL, she passed with flying colors, I kept up with the OT there as I did with the physical therapist, and she did very very well with her PT. When we moved her to the AL, another PT came 3 times a week, and after 6 or so weeks, she completed all her goals, I got a report from the PT and he said she was strong, but of course, would need her walker, Mom does pretty well with the walker, she knows to use it when she needs to sit, she locks it and keeps it by her bed. I appreciate your advice as well since you took your Mom back to her home, the guilt of using her money for the place she wants to leave is enough guilt, but one day when she does pass away, knowing that I kept her in a place she didn't want to be in will guilt me the rest of my life. I would love to give a chance, but with stipulations of course, if she follows the rules we set, we will see and if not, I can keep her at my home, until we find another facility. I am sorry about the loss of your Mom.
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At this point, is your mom not actually still in rehab, covered by Medicare? It seems as though if she is getting PT 3XWeek, that might be the case. Perhaps she is now paying the copay for days 21-100?
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anonymous978037 Dec 2019
Hi again BarbBrooklyn, Mom did have PT and Medicare did cover it, but her PT said she had met all the goals. Before we moved her to the AL, which we should have researched more, she could have stayed at the rehab facility for up to 100 days, but other family members wanted to move her to the AL. I regret not leaving her at the rehab facility for another few months, she did do very well there, the staff loved her, some even called her when she moved to the AL. The hardest part for me is, she doesn't know her money is being used to pay for the AL. She asks and I have been using the excuse that I am still checking on Medicare and if they are helping to pay for it, of course they are not. This is a private facility and do not accept Medicaid. Mom wouldn't qualify for it, It hurts me terribly every time I write a check the facility, luckily we didn't have to sign a contract and we pay month to month. I really appreciate your answer. This is torture for me. thanks
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I would examine the POA document and confirm that it's a Durable one, meaning, it stays in place, after, she becomes incompetent. If it's not that, I'd see an attorney about getting one ASAP.

I agree about exploring her diagnosis and prognosis. Even if she mobile, if the memory and repeating continues, it could mean that she is not able to live alone. She wouldn't be able to cook at all, due to risk of fire. Relying on various family members, neighbors, friends, etc. to chip in, stop by, etc. often turns out to be inadequate. People have their own busy schedules and if she starts to be disagreeable or unpleasant (this often happens with normally nice people if dementia is involved) they would not likely continue. If you are dealing with dementia, I'd read the book The 36 Hour Day. It would provide a good look of what the progression looks like and explains how the condition affects all areas of a patients life.

It's good you take the role of DPOA as serious. I might even consult with an attorney to see what your obligations are. I'd keep in mind that people who have cognitive decline or dementia, often lose the ability to use good judgment or to view their predicament clearly. They often have magical thinking about how things will work inside their home with them, since they don't remember what they just did or said, can't recall how to use appliances, don't recognize dangers inside the home, like starting fires and even call alert buttons don't help, because they forget to press them.

Once you have her diagnosis and prognosis, you might get an assessment to see what level of care she needs. I'd be sure to have input, since she might tell the person doing the assessment that she can manage fine alone inside the home. I recall that after a diagnosis of significant dementia, my LO insisted that she was able to live alone with the help of neighbors checking on her a few times a week! The reality was that she needed assistance with all areas of her life and it was not safe for her to be left unsupervised for any time period. So, it might be that your mom would not ever be able to accept the help she needs long term. It may not be in her ability to do this.
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anonymous978037 Dec 2019
I sure appreciate your advice. I am the durable POA and when we did it, she was of total sound mind, she knows what I am doing with the POA, I took over her bills, business end of things, Drs. etc which has been almost a full time job (I am glad to do it of course) She had an appointment with a neurologist, but when she broke her hip, we had to cancel. Her PCP is working on getting her another appointment. If we have to wait, I will do my own research on it, I live in a large city, I see a neurologist myself, and I could possibly get her a quicker appointment here. I know her Medicare may not cover it, but it would be worth it in my opinion too. She does have a pretty good supplemental, which has helped pick up costs that Medicare didn't pick up, but of course the deductible is high. She is very independent and she could give an aide who comes to her home, a little trouble, by saying she has already done the work there, but stipulations would have to fall in place IF Mom goes home. I could go very frequently, and I would, grandkids could help out, she has many many friends who have offered help but I know too, that it can't be depended on for a length of time. this is such a debacle I am in, it is't just me, I know everyone involved cares about Mom and wants the best for her. The lying to her is the hardest part, she asks me multiple times daily about it. We told her that Medicare is probably covering the cost (expensive of course) and of course they are not. It is a private facility and they do not accept Medicaid. I feel we need to give her a shot, she has lived in that same home for over 48 years and they took such pride in the home. We would retrofit it of course for her, and she would have to agree on the rules we set up, if not, until we find another facility for her, she would have to move in with me and I can take care of her. We have a great relationship and always have, my guilt is killing me about the money we are using, but the guilt would be even worse if I didn't give her a chance to go back home. I appreciate your response!
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I missed that YOU are POA.

So, with regard to money, my mother was diagnosed with Mild Cognitive Impairment; before we knew this, we moved her to an Independent Living facility. My brother had POA; he certainly did not sit her down and get her "permission" to spend 5K per month on this, but if she had asked, we would have told her. And when she asked US to do stuff and we said "no, ask the staff" and she said "I don't want to bother them", I shot back with "Ma, for $5,000 a month, you d@mn well SHOULD bother THEM and not me while I'm at work".

The thing is, you have been given the reins and are charged with acting in your mother's best interests. You shouldn't be lying to her, but you need to be realistic with her about what she is and isn't capable of doing (and what the professionals say about that should be your guiding light, not what mom tells you) and what her NEEDS are going to cost.

If your mom needs daily supervision, you can't just have friends and family who are going to burn out quickly. My mom did well (with MCI) in Independent Living, which costs less than AL; have you looked in to that option? Have you checked out how much in-home caregiving would cost?
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anonymous978037 Dec 2019
thanks again Barb for all your posts. I agree, you paid and she is paying at this facility and shouldn't be afraid to ask for help of any kind. I do know that Mom does things that she should not do there, making her bed, etc. Your idea of being truthful to her is much appreciated. I am working on getting her an appointment with a neurologist, she had an appointment, but she broke the hip and we had to cancel, I live in a big city and see 2 different neurologists here, I can even try to move up an appointment with one of them, I do know the assessment would be costly, but well worth it is her Medicare or supplemental doesn't pick up some of the cost. I dont' think Mom would need daily supervision, maybe 3-4 times a week, I would be spending a lot of time there, as others in the family could check in on her too, her neighbors, who happen to be their best friends, who have lived there as long as she has, have already told me and her that they are there, and they would help in any way they could. They are younger, and my Dad did so much for all the neighbors, he was always available to help out in any way, actually Mom used to get mad at him because he always was helping out others and she thought it wasn't his business. Those same neighbors have told her that it is now her turn for payback. This is just the worst debacle I am in, I guess you are never prepared for this. I appreciate your great advice!
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First mistake, not telling her the truth, it is her money. Don't make another one, sit down and devise a plan, starting out with finding out what her mental state really is, then how to manage her future.

She doesn't have to stay in that facility, do the leg work, research others, compare the pluses and minuses, and the costs. Research the cost of home health care, she will need help, a feisty mind does not mean she has a feisty body.

Slow down, think explore all options, this is not about what you want, it is about her needs, both today and tomorrow. Sit down with her, tell her the truth, no more hiding stuff from her, get everything out in the open.
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I agree with Barb. This sentence struck me, too: "Other family members could help and her neighbors and friends would be there to pitch in too."

What kind and how much help? Realize that you can't direct others what to do. Are these the same family members who want her to stay in the AL place?
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Your profile says that your mom has dementia, yet you state that she does not have a diagnosis.

There is much more to "living at home alone" than just being able to walk.

You need a professional assessment of mom's cognitive skills, her judgement and her ability to do her Activities of Daily Living. That will lead to knowing what level of care mom needs.

You talk about family and neighbors "pitching in". Does that mean someone ordering her groceries online for delivery once a week, or does that mean that mom insists on an all day trip to three grocery stores to get the best bargains, stopping to chat with everyone she meets?

Does she need a cab service arranged for her to take her, alone, to one doctor appointment a month, or does she need to be helped and transported to three appointments a week?

You see the difference?

Who is mom's POA? Ultimately, THAT is the person who is making the money decisions and who should be talking to the doctors about what level of care mom needs and how to best conserve her money.
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I think your first step is getting a more complete picture of your mom’s mental picture. You say there is no diagnosis, it seems in planning what to do next you really need to know what exactly you may be dealing with. If it is Alzheimer’s or another form of dementia, finding out more will help you plan better. Sadly, these things don’t improve. After you know more it’ll help you better plan
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