View unanswered posts | View active topics It is currently Fri Jul 25, 2014 2:55 am



Reply to topic  [ 15 posts ] 
 How do you handle the refusal 
Author Message

Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post How do you handle the refusal
Mom refuses to use her walker and falls or stumbles a lot. The doctors insisted that she have a maid and a caregiver at least 3 days per week. She fired the maid today and has cut the caregiver back to only one day per week. The doctor says he can't force her to have a caregiver.

The problem is that she and dad live with me and I am an only child. Dad is in mid to early advanced stage of Alzheimer's. Her Lewy Body is to the point that she can no longer reason. She gets dad so agitated that I can no longer handle the outbursts. The doctors want someone here 24 hours a day. While I do not work outside the home, we have a small farm that I am unable to keep up for all of the care that they "don't need." I have to leave them in order to maintain what we are doing here on the farm and to visit my grandchildren.

I have spoken with mom's doctors and they all know how difficult she has become. They are all sympathetic, but have no solutions for me. The maid was a God-send. I could actually do something other than take care of them and maintain the house. Now, it is back to me taking them to the doctors, trying to keep up their medicines alone and maintain their house and mine. I cannot afford to pay for the maid or caregivers myself. They have plenty of money, but mom believes they do not. I do not have Power of Attorney. She has been paranoid for years and wrote it so that I only have POA when she dies. Dad is actually POA for her and she for him. I have seen a lawyer, but the only way I can actually "take control" is if I have guardianship.....That is a route that will be horrible from my mother's perspective.


Does anyone have any suggestions for me? Where else can I turn for help? Is there a way to force them to hire someone to help me? I have tried to explain it to her, but that was really stupid on my part. It only makes her agitated. Unfortunately, they read and re-read their bank statements every month or I would just take the money out of their account. That seems so wrong to me, however. What do you recommend?

_________________
Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Wed Sep 14, 2011 10:07 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: How do you handle the refusal
Wow, what a difficult situation! Hugs to you, for starters.

Did your parents move into your house, or you into theirs? If they are living in your house, charge rent. That the amount is the same that a maid and caregiver cost is just a coincidence, right? Then hire whomever you want. Running a farm is a big job. You can't be expected to keep up with all the homemaker tasks, too.

If you moved into their home, then I guess the leverage you have is that you can always move out. It is just more difficult than you thought it would be ... but, of course, if they would let you hire some help then you'd be happy to stay and enjoy their company. You just no longer can be their housekeeper and run the farm.

I don't think you are going to be able to reason either of them into accepting that they need help. But if you present it as you needing help, that might make it a little easier for them to accept. No guarantees -- but worth a shot, right?

If they were in a long term care facility of some kind, Mom would not be able to fire the help. Just something to keep in mind. If you hire the help for your sake (with their money), then you are the employer and Mom and Dad can't fire them.

"I know you don't need servants, Mom. You managed quite well all your life to take care of yourself and your family. But you are at retirement age now, and I'd like to see you enjoy a little leisure. And I guess I'm not as strong as you've been, or maybe the modern world has just gotten too complex, but I don't seem to be able to run the farm and also give you the kind of household you deserve in your retirement."

Dealing with two different dementias in your household must take SuperPowers. Hang in there! Please let us know how this progresses.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Sep 14, 2011 10:31 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: How do you handle the refusal
Hi - sorry for your situation - wow, 2 parents with serious neurological disorders! You really do have your hands full.
You wouldn't expect to leave big decisions, like spending money, to young grandchildren, would you? And parents with neuro. disorders become like small children - they are not capable of making big, important decisions, like where they should be living, how and when to spend money for their care, etc. You are in that transition situation where you need to act like THEIR parent now. It is unfortunate that they did not name you to be POA if the need arose.
Getting guardianship is the ONLY thing that makes sense to me, unless there is some other way in your state of taking over for people who are no longer competent to make their own decisions. Yes, it is tough, making that transition, and for you, having to go through legal channels to change things is going to be very hard, but it's something that needs to be done. Your parents would not want you to have to spend your own money to care for them if they have their own money, would they, if they were able to make sound decisions?
Have you met with your parents' atty? That's a place I might go next. But run, don't walk, because there are other discussions on this forum about similar situations and it can take some time to get this type of situation straightened out. Guardianship seems to take a lot of time and money, but that may be the only course of action that you can do where you live. Are you a signator on their bank accounts so you can write checks for caregivers?
What about the level of care they require now? Does it make sense to have one or both of them living with you? Your own health is likely to become jeopardized with caregiving TWO people unless you are able to take really good care of yourself, get respite from caregiving for a week or two every few months, and have help coming in daily.
It sounds like you already know what needs to be done. You just need some support to help you along the way. There are many of us here who have had to take over finances and medical decisions for our parents or other LOs. We can relate to what you are going through and it wasn't easy for us either. Good luck! And come here often, it helped/helps many of us. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Sep 14, 2011 10:37 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How do you handle the refusal
Is there an adult day care in your area? I would check with your local Area Agency on Aging to see if they have any suggestions. It is a tricky situation and it's only going to get trickier. You need to know what options are open to you. God bless.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Sep 14, 2011 11:38 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: How do you handle the refusal
Were you employing the maid? Perhaps you need to do the employing in order to call the shots.

I do think guardianship is your only recourse.


Thu Sep 15, 2011 12:10 am
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: How do you handle the refusal
Oh, k. It just isn't fair, is it? Remember that you can't do anybody any good if you ruin your own health (mental as well as physical) trying to keep everybody happy. Try to keep in mind what your parents wanted for you when you all were younger - before Lewy and Alz showed up. That's the parent you should think of when you make decisions, not what these disorders have made of them.

Was it your parent's farm before it was yours? Did you take over the family farm? If so, I can see you are in a real pickle. You do need to talk with an attorney, your parents' or someone removed from the situation who can see you as the client.

I think something that attorney would tell you is that you need to get your parents' doctor(s) to work with you on this. If they have said your parents need 24 hour care, they are really talking about a nursing home. Unless you are terribly wealthy and can hire a team of nurses and aides, this is the only way to give them 24 hour care. You can't stay awake for 24 hours a day everyday. I know. I tried.

Explain to the doctor(s) the situation with POA and that guardianship may be your only choice. It does sound like that would be the only way to get them into the NH. Maybe the doctor would advise that assisted living could work for a while. Either way, the doctor is going to have to be willing to say, legally, that both of your parents are incapable of managing their own affairs and each other's.

You're probably going to have to play some politics here, getting a few key people in the community to see what is really going on. As I mentioned, the doctor and attorney. But also your parents' clergy. I know that a rural community can be particularly difficult and that sometimes public opinion can be extremely hurtful. So getting some of the main opinion leaders to fill in as stopgaps when the rumors and criticisms start is going to help you maintain both friendships and your self confidence. Get a couple of your parents' friends to see what is really going on, too. These are also people you can go to for support and reassurance.

Both of my parents came from rural communities, but raised us in the suburbs of a large city. My mother had to get guardianship of my paternal grandfather, as my dad had passed away and he was an only child. My sisters and I were all minors then and Mom was shielding us from the strain of caring for someone in his situation. He kept firing the housekeeper that Mom hired, too. But Mom took the position that she hired the housekeeper and only she could fire her. That poor woman deserves at the very least a medal. Grandpa fired her every day and every day she went back to the awful mess of a man who didn't see any reason to take care of even the simplest things (after losing both wife and son within a few years of each other). Mom also had a terrible time getting the sheriff to take Grandpa's license and keys away. She was that interfering daughter in law from the city trying to tell a small community how to handle its affairs.

The point is that you have some preliminary work ahead of you because of the type of community you live it. People will take sides and as much as you can think you won't pay attention to them, you will. So you need some people to see what is happening now and the toll it is taking on you. Then talk with the doctor and the attorney (both local, if possible). Include a clergy member, if it seems appropriate. These three professionals, along with any friends or family that understand the situation, are going to be your primary support in the next months. Be open and honest with them (this is no time to protect your parents' dignity or community standing). Let them see what is happening. They'll know what your best course is.

k, I have often thought that I'd like to move to the other side of the planet. Want to join me and let someone else deal with this stuff?

Good luck. Check in often.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 15, 2011 12:57 am
Profile

Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: How do you handle the refusal
Thanks for your replies. My parents moved into my home and onto our farm. They added an apartment on, but with a connecting door. Mother was fine until a couple of weeks after she moved in when she had her first TIA and it has gone down hill ever since. My DH is her pastor.

Mom has always been a difficult personality....feels like folks are out to get her and has been in "competition" with me for my dad's love all of her life. Really strange.....because he loved her so. i mostly stayed in my room as a teenager. It kept things calmer. She did change as my kids were born and we moved a long way from them. Truly it wasn't until after the TIA that her personality began to revert to the suspicious and fearful person that i knew long ago. She actually had the POA changed right after she moved in and that was our first inclination that something was amiss.

The lawyer we have already seen was not very encouraging. My parents make too much money each month to qualify for any help for assisted living or nursing home care. They make just over the limit. The lawyer has investigated ways of getting that changed, but with my dad's pension from IBM and social security....that will not be changing. They have spent most of their savings through the years buying whatever they wanted at the time. My mom's "hobby" was going to the store a couple of times a week. What this means is that dad will never have the $5000 for an Alzheimer's unit and yet always make too much for help. Believe me, in the last six months I have pursued every agency and route possible. They all say the same thing. " I am so sorry. This is one of the worst cases I have ever heard." Assisted Living told me that when their money runs out they must return home or go elsewhere.

Guardianship is going to be a terrible thing. Mom will never understand and what she will do to get Dad agitated over it and keep him that way may be more than I can deal with. Their doctors are concerned and keep pushing her for more help. She agrees to it in the office and smiles so sweetly and cooperates so well while she is there.....then she gets in the car and screams at me the entire way home.....accusing me of forcing this on her. She is furious when I say anything in the doctors' office....yet, I must for her own sake and dad's. We see a cardiologist, neurologist and geriatric physician. Is there someone else we should be seeing and how do I ask about guardianship and with which doctor? Her geriatric physician insisted that she give me her license. She, of course, agreed in the appointment, but never did. In fact, she hid it from me so that I could not have it. Now she hates that doctor and refuses to go back to see him. We see the cardiologist next week. He is the one that insisted she have caregivers, maid and stop driving last March. She insists that he meant it as a temporary thing. She has even called his office and talked with his nurse who told her she cannot drive. I have considered giving the cardiologist a "heads up" as to what is going on. I have already talked with him at length about it several months ago, but wondered if I need to remind him of what is still happening.

_________________
Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Thu Sep 15, 2011 7:41 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How do you handle the refusal
This is what happens to most of us whose LOs have to be placed in a facility. No one can afford to continue to pay the high costs [we are paying nearly $8K/month now out of our savings]. What everyone does--is forced to do--is to 'spend down' resources until they are Medicaid eligible and then the state takes over. It is a sad retirement for those of us who worked and saved and stayed out of debt but it a fact of life. I would strongly recommend a Medical Social Worker [through a home health agency or a hospital] to visit with you and your parents. As a home health RN I found their services invaluable for sorting out the options. God bless you and help you get your parents the care they need.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Sep 15, 2011 9:34 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: How do you handle the refusal
It sounds like you are tryingn to keep your mom "in the loop" about these decisions. She is obviously not capable, at least some of the time, to understand what is really happening. Keeping her involved is only going to be more trouble for you. It's like a runaway train - someone with the skills has to step in and do what needs to be done to keep it from crashing.
Yes, your parents will have to spend their money for the help they need. If all of our LOs were receiving gov't assistance for all their care, can you imagine what our taxes would be then? Anyway, if they have some resources, get them the care they deserve and need, and do whatever you need to do so that they can pay for it.
Do you know if your parents have any LTC insurance? Do you have access to their legal papers or bills so that you can see if they do have it if you don't already know?
You may be in a small rural area, but surely there must be a lawyer somewhere that you can find who can help you sort out this mess and get going with a plan to manage their finances, for your parents' sake.
I know it's hard, but remember when your mom goes ballistic over this stuff, it is the disease talking. You have to be the adult and plow forward with their best interest in mind. None of us liked taking over our parents' affairs, but as they regress it is necessary. Be strong. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Sep 15, 2011 9:50 am
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: How do you handle the refusal
Yes, I'd send a note or an email or make a call to the cardiologist before you get there.

What about your father's doctors? Could they be prevailed upon to explain to Mother that he is no longer competent to be her POA, and that she needs to select a person in good health, and younger? It just seems that if they would voluntarily make that change it might be an easier route than guardianship.

With a separate apartment your setup might work for a while if there is additional help.

Best wishes.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 15, 2011 10:43 am
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: How do you handle the refusal
You're saying that your dad's pension from IBM is too high, monthly-income-wise, for your parents to qualify for aid? How about contacting IBM or the agency handling retirement benefits? This can't be the first time that a retiree needs this kind of help. Maybe they will have some ideas for you. I can imagine that a monthly retirement income, especially one that, combined with Social Security, is designed to replace a salary, could play havoc with the spend-down to qualify for assistance. You're danged if you do and danged if you don't. Give your dad's retirement plan a call. The worst they can say is "I don't know."

Oh, the shopping. It's the OCD part of being bipolar. My sister has that problem, too, and it is so bad that it is something the psychiatrist she sees is working hard on. That is the medical professional to add to the mix - a psychiatrist, preferably a geriatric psychiatrist. I can just imagine what your mom will say to that. Maybe it would be easier if you consulted a psychiatrist for your own mental health. Your situation with your parents will definitely come up and you'll get some advice about their situation, too.

With the things you mention that you have heard from your parents' doctors, I'm sure they have a pretty good handle on the state of your parents' health and the challenges all of you are facing. Try to see them without your mom there, maybe without your dad there, too. Be very frank about the situation. I suspect that the neurologist might be the best bet, as he/she would know more about cognitive issues, but talk to them all. At least one of them will have a social worker on their staff or a relationship with social services. The social worker is the other part of the mix. For your own sake and whether your parents qualify for MA or not, get a social worker (county or private agency) involved. Chances are that you can get some help paying for one through your parents' medical coverage, Medicare or supplemental. Or, that can be part of the spend down and monthly expenses. Will your dad let you advise him or direct how their money is spent? You haven't go into a lot of detail about him, but if he is even marginally capable of POA duties, he might be relieved for you to help him, with him just signing the checks.

New thought: maybe IBM has a retiree's group that meets occasionally. See if you can work your way into a meeting and ask around. You might find others in exactly the same situation. If you need to take your dad with, it might make a good father-daughter outing.

I wish you lots of luck. I am seeing that maybe my mom's no pension lack of income may have been a blessing in disguise. From my mom's experience with my grandfather, I think it is sometimes best to do the bulk of the guardianship filing without discussing it much with your parents. If you are going to do it, you have to just do it. You don't need the additional stress of having them fight you on it from the beginning. They'll know soon enough.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 15, 2011 12:31 pm
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: How do you handle the refusal
Sorry about the bi-polar mention. I got you mixed up with another thread. But the shopping is something that could be a depression issue. It could be part of your mom trying to control one thing (even if it is an indulgence) while she feels control of other things slipping away. A psychiatrist is still a good move, even if it is for you rather than your mom.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 15, 2011 12:45 pm
Profile

Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Re: How do you handle the refusal
K, sorry about both of your parents, but the others have given some good advice. It will not be easy whatever you decide to do. You really need to take care of yourself in all of this also. Keep posting and let us know how you are doing and what is going on.

Katie

_________________
Katie, married to the love of my life on June 14, 1969.


Thu Sep 15, 2011 1:22 pm
Profile

Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: How do you handle the refusal
If they could buy even a very small house, that would spend down while protecting some assets--that might sound more agreeable to them. I do believe that mortgage payments would be subtracted from the income calculations.


Thu Sep 15, 2011 2:12 pm
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: How do you handle the refusal
K, my heart goes out to you. What a tough situation!
There has been some really good advice given here that I hope helps you. Before my husband had LBD he was an attorney and I worked with him for a few years. We had some guardianship cases and they are never pleasant, but they are necessary when the parents simply will not cooperate or help themselves in a reasonable way. Your mom sounds like someone who definitely needs that kind of help.
I agree that you should do all the needed paperwork in advance without discussing it further with her or your dad. You need it for both of them. (Your atty will tell you the time to tell them that the Notice of Hearing is to arrive.) Line up all the medical professionals and community/family members who understand your situation well ahead of time. Make sure people are willing to come to the hearing if they are needed to testify. Your best doctor to consult first is the neurologist due to their diagnoses.
I would encourage you to contact personally and privately all the physicians and be very candid about what you need from them to make this happen. A united medical front will be almost impossible for any judge to overrule.
It will be a bumpy ride, but with some planning, you can get more control of the situation and, hopefully, end up with a smoother routine. You must control the money so you can control their care.
Also, you may be able to find folks who need parttime work who could fill in slots of time at your home on a regular basis to help with specific needs. This could make the money go farther that hiring one or two folks for long stretches of time.
God bless you all.
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri Oct 07, 2011 1:01 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 15 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr